Saturday, 25 June 2011

Robbery at the Post Office

Here, particularly for Jan, is the story of the armed robbery at the Post Office.

This happened years ago, when I was in my early 20s, working in central London and living in north London. One particular day I had finished work early and on my way home from the tube station I called into the Post Office.  A number of counters were open and I was nearly at the head of the queue with just a heavily pregnant woman in front of me when in burst a couple of young men in balaclavas waving some sort of guns around and shouting "nobody move". One advanced to the parcels hatch and demanded it be opened.  When a staff member had opened it he vaulted through with admirable agility, produced a sack and told the staff to fill it with the cash.

At this point his accomplice left and was rapidly followed by most of the queue, particularly those who weren't near the counters. I'd rather liked to have made off myself, especially as I wouldn't have been among the first and so could have changed my mind if they were being shot on exit! However, the pregnant woman in front of me was in distress and clearly wasn't going anywhere, and you just can't run off and abandon a woman in those circumstances, can you?

It didn't take long for the staff to fill the sack and Robber Boy let himself out through the door rather than using the hatch and ran out and off down the road, where he was picked up by Accomplice on a motor bike. I didn't see what followed, but it would appear that he must have loosened his grip on the top of the sack because as they shot up the road the top of the sack fell open and notes flew out and were collected up by passers by!

As he left the building the staff sounded the alarm and the limited number of us remaining were again asked not to leave. Again I would dearly liked to have gone as it was all too clear that a long wait was likely, but again I felt I couldn't leave my new-found friend. The staff came out from behind the counters and started wandering round and when no-one seemed to have taken note of my new friend's condition I decided that if I had to wait then at least things would be done my way. I approached the member of staff who seemed to be in charge and said firmly (in my best imitation of my mother!), "This lady needs a chair and a glass of water. Would you see to it immediately please?" The chair and water were produced and I asked her if she had far to go home and whether anyone could come for her. She said that her husband would come if she could phone him.

At that point the police arrived and said that they would want to speak to each of us in turn and please to be patient. They showed signs of deciding to speak to the staff first, so again my mother-imitation seemed like a good idea and I suggested to one of them that my new friend needed to phone her husband and get home as quickly as possible. This was in the days before we all carried mobiles so we were taken into the office and she phoned him. In fact, the police spoke to the customers first, possibly because they feared my friend might be about to go into labour...  Not long after this her husband arrived and after they'd both thanked me he took her home. I was able to leave in another 5 minutes.

There is rather a nice sequel to this. A couple of years later I had moved a bit further north but still within the same general area and was working locally. One day I was walking between home and work when coming towards me was a man I vaguely recognised and who was carrying a child on his shoulders. As we passed he said to me "Were you in the East Finchley Post Office when it was held up?" I said that I was and realised how I knew him. "You helped my wife," he said. And added, gesturing to the child, "this is the baby"!

Saturday, 18 June 2011

Patients Participate!

This was a workshop held today with a view to bringing together people from a wide range of communities (patients, researchers, interested charities) to look at the motivations, challenges and barriers to people accessing biomedical information. It was a day of thought provoking work as we thought through how these challenges can be met. Although I was there as a result of my personal involvement with Independent Cancer Patients' Voice, I also had plenty to think about - and say! - in my work capacity.

The day was introduced by Liz Lyon of the University of Bath. She set the tone in her opening remarks, commenting on the fact that citizens are getting involved in a wide range of projects across a variety of branches of science. She went on to say that sometimes when research is published lay understanding can be lost in the technical language.

Lee-Ann Coleman of the British Library (who hosted the day at their Conference Centre) discussed Open Access and posed the question "does access make it accessible?".  Sara Ellis of the Association of Medical Research Charities reminded us that involving patients at all stages is not always easy and may require organisational cultural change. She also made the extremely important point that involvement must be meaningful and not just tokenistic. This last point chimed with the experience I have had over the last c15 years working in the disability sector.

Melanie Welham from the University of Bath concluded the first part of the Workshop with a consideration of the barriers faced by both patient and academic communities and made the point that better communication leads to wider participation.

After that we moved to smaller working groups to think through the needs of the various groups who access biomedical information, including a discussion on why and how they accessed it. This took some time and was discussed in considerable detail. At the end of the time each workshop came up with a set of key recommendations. These included things like the need to produce clear lay summaries that include things such as any uncertainty in the information and the context within which the research had been done, lay involvement, information formats and open access to information in various layers of detail. Thought was given as to how this could be achieved with further recommendations such as a set of guidelines for producing the lay summaries.

After the recommendations from each group had been fed back there were final presentations from Graham Steel, who is a patient advocate, and from Simon Denegri, chair of Involve. Graham Steel emphasised the use of modern technologies, while Simon Denegri mentioned the new contract the research comminity has with society and the fact that lay summaries can bring the science alive.

The project is ongoing and will continue its work aiming to bridge the gap in access to and understanding of biomedical and health information and research. It is clearly a worthwhile project which should open up the availability of scientific research to a wider community.

Monday, 13 June 2011

My Other Life ?

Picking up the idea of My Other Life suggested by  Journeying Beyond Breast Cancer, I don't think I would say that I have another life. For me, the whole point of life In the Land of New Normal is that following diagnosis and the immediate treatment I am (like many others) getting back to my everyday life but that as a result of the cancer some things have changed. Some of the everyday life gets written about in this blog, but admittedly not all that much as yet.

So readers of my blog will know that I enjoy walking and needlework, am interested in chemistry (thanks to my late father) and that I have recently taken up curling. From other social networking, people may know that I am involved with medieval textiles and living history. What many don't know is just how obsessed I am with a particular group of late medieval businesswomen. So obsessed in fact, that I have an address book full of the names and locations of over 250 women who have been dead for between 400 and 700 years.

A barrister by profession, I now work for a third sector disability organisation where I run an advocacy service. Highly rewarding and totally absorbing work for a charity with some very thoughtful and supportive trustees.

I love reading and music; I played in my school, university and county youth orchestras, but mainly only listen these days. I don't know where I would be without my iPod enabling me to take so much music everywhere I go. I prefer live theatre to film and have been known to go to performances of Shakespeare by both the Royal Shakespeare Company and the local amateur society in the same week, thoroughly enjoying both.

Early this year, spurred on by the need for more weight bearing exercise, I joined an Egyptian dance class. I'm not very good, but am loving it. It is a very different style of dance from the reels and country dances I learnt growing up in Perthshire!

Something I am absolutely no good at is drawing. People have been known to fight over who has to have me in their team for a game of Pictionary!

I don't do as much cooking as I used to. I've never been all that keen on the "what shall we eat tonight" type of cooking, but love what I call production cooking. By which I mean multi-course dinner parties, with days of preparation and the opportunity to bring out the good table linen, china, cutlery and glasses . There doesn't seem to have been much time for that in my life for a good few years now, but I still enjoy it when I get the chance.

That is a bit more about my life and I'm sure that more will appear from time to time in the blog. Almost certainly there will be new experiences that get a mention. There may be passing references to places I've visited in the past (such as the disused quarry where I was fossil hunting by torchlight with my geology class when I found my first trilobite). Possibly there will be reminiscences - did I tell you about the time I was in the post office and it was held up in an armed robbery???

Oh yes, one more thing - we may live on opposite sides of the world today, but fellow blogger the Feisty Blue Gecko and I were at school together!

Friday, 3 June 2011

The Patient's Voice

A couple of weeks ago I was at the Association of Breast Surgery's conference in Manchester. I had intended to post about it before but seem to have been incredibly busy.

I was there with the Independent Cancer Patient's Voice (ICPV), an organisation that aims to bring the patient's voice into clinical trials; which liaises with researchers and encourages, trains and supports patients to get involved.  We had a stand in the exhibition and spent the conference networking and attending sessions.  It was an excellent opportunity to hear about new developments and catch up on new and existing trials and research.

Perhaps the most controversial development that was presented was the 23 Hour Pathway - in effect day surgery but with a possible overnight stay for all non-reconstructive surgery.  While this is, in effect, what happens with great success for many people at the moment, there was some considerable disquiet at the thought of it becoming standard.

There were several reasons for the disquiet. One was a fear of complications and one surgeon pointed out that she operates on a Friday which would mean less back-up being available for a patient at home the day after surgery. Another point raised was that some people's circumstances don't lend themselves to day surgery and if it was standard that might be overlooked. There was a fear that if day surgery is routine it might be seen to imply that it was minor surgery whereas it is usually only the starting point of a potentially difficult treatment process with emotional and psychological impact. It was also pointed out that less time in hospital might make it impossible for Breast Care Nurses and physios to see patients and check on them after their surgery, with a possible detrimental effect on physical and psychological recovery.

ICPV had previously held a study day that included this topic and had produced a briefing paper so we were able to hand this to visitors to our stand as well as to feed into the discussion. It looks likely that this will be rolled out nationally but hopefully the concerns will be noted and the process modified where necessary to take these into account.

Personally I was very pleased to be discharged after slightly more than 23 hours and a night in hospital. But I was also glad that there had been time for my BCN to visit me before surgery and again the next day, and that I had a visit from the physio to check that I knew how and when to do the exercises.