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Patient Participation: Flying by the Seat of Our Pants

Introduction:
Kim arrived at the Patient Participation Group as our meeting was about to start. She apologised for
her late arrival and mentioned that she was unwell; off work with anxiety yet again. The PPG had
been recently reactivated with a fairly new membership and we were all finding our feet as patients
wanting to have a say in our doctors Practice.
Practice staff facilitated our induction into how things were done in the NHS . They held our hands
by chairing and taking minutes at the first few meetings. As we felt our way largely by asking
questions and raising personal matters a semblance of order emerged. Kims disposition on that
Saturday morning provided an opportunity to move things forward and we took it. We decided to
attempt to fill one of the suggested tasks of a PPG and set up a Depression and Anxiety Support
Group (1).
Developing Our Support Group
We relied heavily on guidelines from Depression Alliance to establish the format of our Support
Group (2). This small organisation provides excellent resources and their development officer,
Laura, made a personal visit to help us clarify the way forward. Practice staff provided excellent
administrative support in assisting us to develop attractive recruitment material and systems for
patient self- referral. Our arrangements led to a steady stream of interest and we looked forward to
the coming weeks with optimism.
Monday Mornings
I agreed to take on the role of Group Facilitator and used guidelines from Depression Alliance as a
starting point for our meetings (3). Armed with appropriate ground rules that all attendees had
signed up to we had a basis for as supportive environment for our fortnightly meetings (4). I felt well
qualified to undertake the facilitating role; with my personal experience of depression and my
professional experience as an adult educator.
Issues and Outcomes
It is not my intention to describe session plans and whether they were successfully implemented.
Like all good educators there were times went I just: went with the flow. In fact, the discussion in
one session revolved around owning dogs, in another life in the armed services. The intention of this
section is to outline some of the issues that arose and the outcomes that developed as a result of
our meetings:
Recruitment: All attendees responded to publicity material that the Group had developed (4). No
patients attended as a result of intervention by Clinical Staff.
Treatment; Several patients reported anomalies in the treatment they had received for their
condition. There was little evidence that the current NICE Guidelines for treating anxiety and
depression were being followed. Certain patients had been prescribed medication that mental
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health professionals regarded as inappropriate or having contra indicators to their condition. There
appeared to be clear evidence of few opportunities for patients to access talking therapies.
Patient Awareness of Treatment Options: Some patients were unaware of the existence of our
Practice Counsellor; others had been told his waiting list was so long it was a waste of time
considering referral. Several patients h were unaware of the possibility of referral to outside
agencies to take part in their treatment plans. One patient in particular was keen to have Cognitive
Behaviour Therapy but had not been informed of local provision.
Risk Assessment: The Practice responded positively to the concerns we raised in our document and
accepted our proposal of appointing a Lead Practitioner for Depression and Anxiety (5).
Working towards the Gold Standard: The Practice is committed to improving provision for patients
suffering from anxiety and depression. Guidelines have been issued by the Lead Practitioner that
mirror NICE recommendations (6). Our Support Group has become an integral part of the Practices
approach to treating anxiety and depression (7). We are planning to structure sessions around a
model developed by Harvard Medical School the Six Steps to Recovery (8).
Flying by the Seat of Our Pants: Rick the Chair of our PPG has often commented that those of us
involved in the Support Group have been flying by the seat of our pants. He has a point: we have
been left to our own devices with Clinical Staff rarely attending our meetings. However, now we
have agreed a flight path our meetings will have a new direction. The revised arrangements leave us
with a new issue to consider: how to evaluate the next phase of our work?
A View from the Flight Deck
Even when you are flying by the seat of your pants it is possible to have a destination in mind. As
the pilot of the Support Group I had a place in mind. I make no secret that I wanted to share with
others how I had escaped from the Emperors New Drug ; the work of Irving Kirsch had helped me to
see that long term medication had its shortcomings (9). Irving had also established that anti-
depressants had little efficacy in treating mild to moderate depression. I began my role as facilitator
as a fan of Irvings my experience with the Support Group converted me into a disciple; wanting to
spread his message.
My latest depressive episode had been severe; resulting in being sectioned under the Mental Health
Act for Observation and Assessment with a period in a locked ward of a Psychiatric Unit. Side effects
of mirtazapine; dreadful night sweats had induced me to come off medication that a psychiatrist had
told me I would need for life. A supportive GP and Clinical Staff at our Practice assisted my persona l
withdrawal schedule; I simply stopped taking the pills! Almost immediately I felt better without the
medication; no night sweats and my enthusiasm for life returned. As facilitator to the Support
Group I wanted to share my experience with others; if I could do it, so could they.
One of the initial members of the crew, Kim, responded to our advice to go back to work.
Consequently, her involvement in the Group was limited to the planning stage; she never attended a
meeting. I persuaded Rick to join the Group despite the fact he had never been a sufferer. His
contention that he did not understand the condition made him an ideal person to have on board. As
part of his induction I lent him Irvings book: his conversion was automatic; one of his stock phrases
being: if there was a tablet for it then it wouldnt exist. His other favourites are: s happens and
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its not an illness its an emotion. I hoped that Rick would be a compassionate foil to those who
saw their condition as a result of difficulties in their life; particularly when you consider his
interesting life (10).
There is little doubt that some patients struggled with our hidden curriculum. On occasions I may
have given Rick too much licence to put the emotional case: you can be sad but you dont have to
be depressed. There was one unfortunate episode when a new attendee walked out saying: this is
not what I am looking for. Others challenged Ricks right to be there; particularly when he was on
song. However, in my view Ricks contribution was invaluable and played a critical role in our
mission.
It is clear that there were risks in our strategy. Firstly, we had no prior knowledge of the background
of attendees; the only information at our disposal was what they chose to reveal in our meetings.
Secondly, if patients stopped attending we had no information on what had caused them to
terminate their involvement, either temporarily or permanently.
From our limited involvement with a small self-selected group of patients questions remain about
the chemical imbalance theory of depression. Several patients reported on events in their life that
had brought about their low mood. One patient reported a serious accident that had left him in
constant pain with no hope of respite. Another mentioned that his wifes condition meant that she
no longer recognised him and he visited her on a regular basis to feed her. Others mentioned
difficulties at work or with their children. Such examples appear to confirm that chemical imbalance,
if it indeed exists, is more likely to be the effect of low mood rather than the cause.
Laughter and good humour often emerged from the Baby Clinic, where we held our meetings. I
would suggest that our successes in lifting morale were not just about the cakes that became a
feature of our meetings on certain weeks. I had sobering experience at the final meeting I attended
before I temporarily decided to curtail my involvement in the Group (11). I listened attentively to
Ray, one of our founder members, and his stories: of life down dock, he had dragged himself in
after spending the week end fighting for breath and calling on the assistance of paramedics. Ray
said that he was determined to drag himself to the Support Group on that morning; his difficulty in
drawing breath still pronounced and concerning to any interested party.
Flying by the Seat of Our Pants
Ricks description of our methodology with the Support Group is a useful starting point for any
consideration of patient participation in the NHS. I am certainly not aware of any blue print for the
way that patients can have any real influence on the provision of health care. However, at a time of
great changes within the NHS and revelations that amount to negligence; leading to unacceptable
death rates, real progress has been made at Clee Medical Centre.
Flying by the seat of our pants we have found ways of patients having a direct influence on how a
particular part of health provision can be improved; the treatment of anxiety and depression. A real
partnership is on the horizon where representatives of the PPG will become an integral part of the
delivery of health care provision. It is commendable that at a time of great change including
reductions in budgets that Clee Medical Centre have supported patients to find their feet and helped
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them to use their wings in an effective manner. As my dad used to say: whenever Maureen and I
were flying off on holiday: happy landing.
I am not sure if Flight Sergeant John Collins ever took wakey-wakey tablets to help him get through
his thirty five operations as a Main Gunner in a Lancaster Crew (12). I doubt if my mum ever
resorted to medication to help her anxious wait for news of his safe homecoming: sheltering from
the Blitz under the dining room table in her Coventry home. What is certain is that my dad would
have been proud of the battle my sisters and I fought, to persuade my mums GP to take her off the
anti-depressants he had prescribed following representations from her Care Home. Mum soon
recovered once the medication had been terminated; now able to raise herself from her chair, still
missing her husband of 68 years, but able to raise a smile once again. Given time she would have
pulled herself together and not had to endure the dreadful side effects of anti-depressants,
prescribed by a doctor who decided on medication based on information from Care Staff. If doctors
are prepared to give patients time when they are participating in the structures of the NHS why
dont they give them the same treatment when they are feeling low?

References
1. Notes on role of PPG Clee Medical Centre
2. Setting up a Support Group, Depression Alliance
3. Role of Group Facilitator, Depression Alliance
4. Posters flyers and displays designed and produced by Kim, Paul, Rick and Admin Manager (CMC)
5. Risk Assessment CMC, Collins and Garrod
6. Guideline Depression and Anxiety, Dr Sibtain
7. Minutes of D and A Sub Group August 2013
8. Six steps to Recovery, Harvard Medical School
9. The Emperors New Drug, Kirsch
10. A Tale of Two Lincolnshire Lads, Collins and Garrod.
11. Log Book of F.S. John Collins, RAF Bomber Command 186 Squadron

Paul Collins
September 2013


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