A Wordle of my blog posts so far!

GBS Annual Conference

I recently attended the GBS Support Group Annual Conference. It was the first time I had been to a patient day, and it was interesting.

Talking to patients, they found it of enormous value both being able to meet others with similar experiences but also to gain information from the high-quality medical speakers during the day.

Not surprising, but still shocking - over 50% of neurologists had not heard of the GBS Support Group! I know that doctors can not know all the support groups for all conditions, but one would expect that they would have thought that every condition would have a support group!

There was a good talk on rehab for GBS patients - it explained the process of clinical trials well, and highlighted the problems of studying such a rare condition.

Cochrane Collaboration

I recently listened to a really interesting talk given by Dr M Lunn at the GBS Annual Conference about the Cochrane Collaboration. He explained the organisations work very well, and it was informative.

The concept behind the Cochrane work is very valid - the meta-analysis of all the papers on a particular topic, and has produced some results which have had a significant impact on clinical practise.

Since the publishers Wiley agreed to make the content public, it had effectively become a possible resource for patients to access. Addressing this, the GBS Support Group have funded lay interpretations of reports relevant to GBS so patients benefit from the wealth of information. The site has already got summary podcasts and some lay explanations, so it heading in the right direction!

They have also recently published a book, The Knowledgeable Patient: Communication and Participation in Health, which details how to use evidence to improve communication and produce better healthcare outcomes. The author Dr Hill says “Communication in health is not taken seriously enough. Statistics show poor communication between health professionals and patients or their families has led to adverse consequences for the patient and higher costs to the health system. . . . Research is telling us that communication is critical to health and to a person’s ability to manage their health."

“Communication is the most common ‘intervention’ in the health system. But as a society we don’t usually see it this way. Evidence is building to show the different impacts. For example, passive ways of informing people about safe medicine use are not as effective as more active ways. Evidence like this should have an impact on health policy and health actions at all levels – from an individual taking preventive health actions, to health professionals and consumers making decisions together, up to people contributing to new policies.”

Customer Care Training in the NHS

Yesterday I attended a Customer Care training session as a Patients Ambassador (with the Patients Association). It was an interesting morning, run by the clinical training officer and aimed at a range of NHS personnel (nurses, technicians, clerical). The customers were defined as both patients and other colleagues. Here a few points that I took away from the morning . . .

1. Everyone who attended the course fully understood the importance of good customer care - the issues that needs to be addressed is why it does not happen all the time. There is a difference between the rhetoric and the reality.

2. For a hospital to improve its service, compliments are just as useful as complaints! Mental note: submit a compliment about one aspect of one of my doctors!

3. Apparently in retail, 69% of people value the emotional experience as much as the product. One can only imagine that the percentage is significantly higher in healthcare!

4. There was a good focus on taking responsibility and avoiding defensiveness - "not my job/department" etc. With the NHS being such a large organisation, this is bound to come up, but the trainer was very good at challenging defensiveness, and said it was really important for staff to eat humble pie and try and please/reassure the customer. From experience, I can not emphasise what a difference this would make!

5. The course was supposed to use patients stories, which it did not really do - I think introducing a few stories at the begining would have really improved the course, setitng the content in context.

6.Customer care is something everyone has experienced - in shops, cafes etc. so getting people to talk about their experiences helped them realise the service they provide.

Story Telling

A blog post on the Health Foundation website talks about stories and their value in promoting change. I had only previously considered stories in the context of providing advice and support to other patients. The examples given by Simon Morgan could be dismissed as just anecdotal evidence, and to a degree they are. But the personality of the patients shines through such that they are memorable and show the human benefits of innovative change to practise!

Participatory Medicine

The Guardian Healthcare Professional blog has a very good article describing the apps available to patients to empower them in relation to their health. It is aimed at clinicians, and outlines the benefits of this new participatory medicine.
A good backgrounder to patient-empowerment practises.
Read it here.

Recordings of appointments

As a patient, on of the hardest things about appointments is understanding everything that the doctor says! An innovative trial in Scotland is offering patients recordings of the appointments in which they find out bad news about their cancer. It is widely acknowledged that people only remember about 10% of a conversation, and this particular conversation about a terminal illness has a lot of information and emotions, making that harder.

Of course, patients can record their own appointments, but this demonstrates that the healthcare professionals understand the difficulties and it reassures the patient that it is normal to not feel overwhelmed by the information.


Read about the pilot here.

Rethinking Depression

The WSJ has a very enlightening article about the way researchers are rethinking depression as a complete systematic disease - with mood as the obvious symptom, but with physiological changes occurring throughout the whole body. On top of the physiological effects of a long-term condition, the added physiological strain of depression is a serious concern for those managing patients with long-term conditions - and highlights the importance of managing the emotional aspects of a long-term condition.

I find it scary that it is equivalent to 'accelerated aging', but it is really positive that depression is receiving such attention that in turn will hopefully improve its treatment.

Read the article here.

Holistic Rehab

The WSJ has recently reported on a very interesting study which looks at the activity levels of patients with impaired vision. The researchers found that people with impaired visual function look on average 26% less steps each day compared to someone with normal vision. Rehab programs do not stress the importance of physical activity with these patients, but this reduced physical activity is  significant since it raise the risk of developing additional illnesses. It should be noted that any activities such as swimming or upper-body exercises were not included in this study.

Still, it does show the importance of preventing co-morbidity in  patients with other long-term conditions through holistic rehab programs that take an in-depth look at the patien'ts life.

Read the article here (2nd article  down).

Walking prescribed for Depression

A recent study in Mental Health and Physical Activity Journal has found there to be significant benefit in taking walks for people who suffer from depression. Personally, I have found fresh air and the mild exercise of a walk to be an excellent mood-booster when feeling down - being surrounded by nature and the endorphins and fresh air are very therapeutic. It is excellent that is has been scientifically recognised, although as the BBC article points out, further work needs to be done. But as a low-cost option with other benefits such as Vitamin D and improved fitness, surely it should become a popular prescription option for doctors?!

Read the BBC article here.

Making your time with the Doctor count

The Journal of Participatory Medicine has published an editorial comment about making every second of your doctors appointment count. It is honest about the time constraints many doctors and patients find frustrating, but offers some useful advice . . . taking notes, preparing/prioritising questions, taking a friend to listen, and being proactive about follow-ups and results. This sort of advice is really important, and should be given by some doctors themselves, to help their patients make everybody's time during the appointment worthwhile.

The full editorial is here.

Medical School: Maximising Patient Continuity for Students

Having spent 3 and a bit years at medical school, I can relate to the lack of continuity medical students and doctors have with patients. During my time, I had 4 visits with a pregnant woman, and several with a cancer patient. These were designed to do what this new program at Harvard Medical School is doing - giving medical students an insight into the process of being a patient, instead of a one-off 3 minute bedside consultation.
The Harvard program, the Cambridge Integrated Clerkship, takes third year students through a year with the disciplines taught along side each other instead of in discrete blocks. This provides the chance to follow patients over time, seeing the impact of their illness and all those involved in managing it.

She mentions the principles of commitment that it installs in her - something I would treasure as a patient. It would allow the social, emotional and practical aspects of ill health to be conveyed.

Read the full article here, and a review of the program here.

5-a-day for Mental Health

Mindapples is a campaign set up to promote better mental health for the nation. As a campaign and program, it is successful because of is simplicity and use of crowd-sourcing to get people thinking about mental health in the same way as diet - little things like 5-a-day that become second nature. It is a brilliant structure, and really refreshing. The use of crowd-sourcing uses the expertise on day-to-day living that we all have and avoids the problems of paternalistic medicine in mental health.

Read the Guardian interview here.