Giving a talk on what I've learnt in 30 minutes - what I really want to convey to my colleagues

Good news. The conference committee have offered me a 30minute spot to give the talk that I wanted to do in 60 minutes (a three-hour workshop would have been better, but I didn't ask for that because I didn't want to commit to a lengthy presentation in case it tired me out too much)

I spent most of the day yesterday rewriting my title and abstract for the 30 minute talk.

Title:
Role reversal: on being a patient.

Abstract
Patient-centred care enables patients to be active participants in

their clinical care, resulting in improved perceived healthcare. The
two models of care were experienced by a neuropsychologist who became
a patient. Traditional care was generally characterised by supportive
attitudes and practices, but was perceived to be driven by standard
procedures and protocols. It was reassuring and appreciated during
periods of significant illness when the ability to actively engage in
treatment decisions was low. A patient-centred approach to
rehabilitation gave a sense of engagement, motivation, empowerment,

and achievement. This approach would have been difficult to apply

during times of acute illness or postoperative recovery. Consumer

experiences of receiving healthcare services can provide valuable

insights for clinicians, perhaps particularly so if the patient is
also a clinician.


It's very formal, and a bit boring to read, I wasn't entirely happy with it, but my confidence has taken a battering from this whole thing, and I wanted to play it safe.

Then inspiration hit this morning, and I came up with this new title and abstract

Surviving Glioblastoma Multiforme: a neuropsychologist's experience.

Abstract
Glioblastoma multiforme (GBM) is one of the most aggressive forms of
brain cancer, with a median survival rate of 3 months, and a 5-year
survival rate of only 5%. Recent research has resulted in
significantly improved survival times for GBM patients treated with
Valgancyclovir, an antiviral drug for cytomegalovirus (CMV)
infections. CMV is involved in nearly all high grade gliomas, with the
viral load of the tumour sample being related to prognostic outcomes.
Treatment with Valgancyclovir was commenced along with standard
chemotherapy and radiotherapy shortly after two craniotomies for
multifocal GBM (left occipital, right parietal) in September 2013.
Regular MRIs have shown overall improvement, with no tumour
progression or recurrence. This presentation will briefly summarise
the research on Valgancyclovir and GBMs, discuss a neuropsychologist's
experience of having had GBM, and explore the implications and
opportunities for neuropsychological practice.

Ben said it sounded like I was going to focus the talk on me (well, what else is a patient's perspective about?), and another friend (who hasn't read the abstract yet) said that it sounded like a significant deviation from the original proposal to talk about patient-centred care from a consumer's perspective, and was dubious about the validity of the research (I think I can evaluate research for myself reasonably well, I didn't spend 7 years on a PhD for nothing). I reassured them that I would still attempt to cover everything in the available time

So I'm wondering if I should try to combine the two titles and abstracts (abstract should be about 100 words long):

3rd Title:
Surviving GBM: a neuropsychologist's experience of patient-centred care

3rd Abstract

This presentation will discuss a neuropsychologist's experience of traditional and patient-centred care in the context of treatment for GBM, and explore the implications and opportunities for neuropsychological practice. Traditional care was generally characterised by supportive attitudes and practices, but was perceived to be driven by standard procedures and protocols. It was reassuring and appreciated during periods of significant illness when the ability to actively engage in treatment decisions was low. A patient-centred approach to rehabilitation gave a sense of engagement, motivation, empowerment, and achievement. This approach would have been difficult to apply during times of acute illness or postoperative recovery. Consumer experiences of receiving healthcare services can provide valuable insights for clinicians, perhaps particularly so if the patient is

also a clinician.

I've only received two emails about the GBM-focussed abstract, one supportive, one wondering if I was going to give a totally different talk. I'm probably being a nuisance to the conference committee, but I have so much to say, and I don't know how I'm going to do it justice in 30 minutes. Also, I want the talk to be interesting to neuropsychologists, and I know the GBM angle will be more appealing than a pure Patient-centred vs traditional care approach.

If I didn't have a life-threatening condition that may prevent me from presenting next year, I'd just cancel this year's talk, and plan for a 3-hour workshop next year. I'm not going to do that, I'm going to harvest the hay while the sun shines, or carpe diem, but it's a bloody difficult task to condense everything into 30 minutes. if I only had 10 things to say, and spoke on each one for 3 minutes, my time would be up.

Apart from all the things in the two abstracts, here are some of the other important things I wanted to share:

1. Neuropsychologists rarely get to see patients who have had brain tumours, but it should be a routine part of care. Patients and carers need education about the sequelae of brain tumours, from the effects of the steroids, to cancer-related fatigue, concentration difficulties, and specific impairments that arise from focal brain damage. I understood the cognitive and concentration issues from being a neuropsychologist, but I had to research a lot about cancer for myself. How hard would this be for less informed patients and carers?
2. There was little continuity of care after my combined CT and RT was over. I have to keep asking when I should see the consultants again, and nothing has been provided to me in writing. I've had to take the initiative to write things down, and to request written copies of imaging reports. Again, how would lay people know to do this?
3. the acute medical model simply sweeps people up into a rather impersonal treatment schedule, which would be rather bewildering for cognitively intact patients. For those struggling with concentration, fatigue, and other cognitive issues, it would be very difficult
4. all brain tumour patients should be advised to get a Webster pack from their pharmacist, reducing the chance of taking medicines incorrectly, or in my case, accidentally taking a double dose, which resulted in my first seizure. Having to organise medicines requires good concentration, and is a considerable burden on carers.
5. Having to take many tablets each day eventually results in an aversion to medications, even in the most rational and motivated patient.Regular medication review to ensure only essential medications and supplements are taken might help reduce the development of medication noncompliance.
6. patients and carers should be seen separately by clinicians as a matter of routine practice. There are important things that patients and carers don't feel comfortable talking about in the presence of the other, and as the patient's wellbeing is affected by the wellbeing of the carer, it is vitally important that the carer is also supported
7. Experiencing nausea, pain, and fatigue, and difficulties with memory and concentration have taught me how the first three can affect motivation and ability to engage in conversations, assessment, or treatment planning. Being berated for forgetting things, repeating oneself, or having lapses of concentration affect self-esteem, and perceiving an irritated response from the patient as being irrationally irritable only makes matters worse.
8. Small doses of clonazepam, prescribed to help reduce the risk of seizures, can work wonders in reducing overstimulation in noisy environments
9. Most doctors are good or even fantastic, but some can come across as tactless and dismissive. This doesn't help a patient who is trying to be involved in discussions about their condition or clinical care.
10. My time as a patient for breast cancer and brain tumours has taught me that clinicians should respond promptly to referrals, even if only with a brief visit or phone call, because patients have to wait a lot for things to happen, and not knowing when things are going to happen increases anxiety
11. Clinicians should routinely ask patients what they would like to gain from the clinical encounter, whether it is information, advice, support, or guidance on possible treatments and other strategies. 
12. The question "how are you feeling?" can be answered on a number of levels: physical status (in pain, nauseous), mental status (muddle-headed, anxious, angry, upset…) - A clinician has to allow time for a patient to answer the question honestly, and needs to show that they are comfortable with the patient revealing their distress
13. It can be very difficult to disclose emotions when denial and repression are such effective defensive mechanisms. If a patient is coping using these defences, respect that it is a form of self-protection, and offer them other practical strategies to cope with their situation, like tip sheets, and focussing on the present, or finding the good in the current situation
14. Routine individual psychological support should be offered to all cancer patients. Support groups are not suited to everyone, and may be traumatising for some
15. The internet is a blessing and a curse. It can provide useful fact sheets and information for dealing with health conditions, but it can also provide too much information on prognostic statistics that would cause despair in people who are not trained to understand them.
16. Keeping away from sad consumer stories on support websites is a good idea if you want to avoid getting depressed about having a serious condition.
17. Information about survivor stories or new treatments can be inspiring and allow a sense of hope and optimism.
18. Being chronically ill saps one's energy and makes it hard to maintain optimism about the future.
19. Neuropsychologists usually don't get asked to see brain tumour patients preoperatively, as many tumours are classed as medical emergencies, requiring surgery as soon as possible. But there is an important role for neuropsychologists to provide postoperative education and support, and assessments for return to work or study. Cancer services are usually well-funded, so neuropsychologists might find that funding is available for sessional neuropsychology services to provide assessments, eductation and support for people with brain tumours

There are probably 20 more points I could make, as well as the observations raised in the first abstract. I don't know how I'm going to do it justice, but I'm not going to let it get me down, I want to try to do something valuable, even if I only have 30 damned minutes. I wish I'd got the abstract right in the first place, and had been given my hour spot. This would have been impossible to cover properly in a poster (it would have looked like a better organised version of the list above), but it's also a big task to condense it into 30 minutes. I want to give a talk so that I can share what I think are valuable insights with my colleagues - it's not about big-noting myself, or reporting on myself as a single case study, or even to talk about GBM. However, Valcyte  may revolutionise treatment and survival for people with high-grade gliomas, and open up a new field of practice for neuropsychologists, who need to learn about patient-centred care and to benefit from consumer perspectives on healthcare. I think I'll have to write an article that covers everything I want to say, it will reach more people and have a greater impact than a single conference presentation.

Wish me luck. I'm going to walk the dog and do some gardening tomorrow as therapy.