Wednesday, 2 November 2011

Parliamentary Showcase

You may have noticed me bang on about INPUT quite a lot these days and for good reason; we are both big time fans of insulin pump. The insulin pump and its real-life pancreas mimicking skills have helped me come full circle from a place where I was frightened of my own future and had quite frankly given up trying a little. Since my pancreas decided it was no longer going to play ball with the rest of my body and would allow my insulin producing cells a very extended holiday (I believe there has been a problem with security at the other end for, ooh, 24 and a half years so far), the insulin pump was my saviour. It has allowed me freedom, better results for my effort, to live more independently, has restored my confidence in my own ability to manage my condition and has opened my world to new opportunities. Not to mention the reduction in complications I was beginning to harbour.

Luckily for me INPUT are equally as fanatical about insulin pumps; so much so, that they spend a huge amount of time lobbying up and down the country for improved access to insulin pumps, awareness raising and taking to task those PCTs (Primary Care Trusts) who have yet to meet the National Institute of Clinical Excellence (NICE) benchmark of 12.5% of people with Type1 diabetes accessing Insulin Pumps. I'm not sure what my PCT is currently achieving, but I know it isn't there just yet.

INPUT kindly invited me to attend the Medical Technology Group's Parliamentary Showcase with them and help them man (well technically woman) their stall and answer questions about the pump and highlight some of the issues faced. This is an opportunity for members of the MTG to set up shop in the Attlee Suite of Portcullis House in Westminster and wait around for MP and parliamentarians to show up ready to impart some wisdom on them.

On arrival there were stalls (wo)manned by us, Medtronic, Heart Research UK, JDRF, Boston Scientific, The Patient Association and The Lindsay Leg Foundation amongst others, each with their own stall packed to the brim with leaflets, diagrams, pie charts and photos to illustrate their cause. As well as being there to answer questions, time was given to focus on the latest campaign of the MTG (last years was insulin pumps) which is UFE, or Uterine Fibroid Embolization. UFE is a non-invasive treatment for Fibroids in women which removes the need for a full abdominal hysterectomy which remains the most common (but not most popular) method of treating Fibroids. Not only does a hysterectomy involve several weeks if not months off work, it is highly invasive, expensive and for women, demands huge psychological adjustment for their female reproductive organs to be all together removed. Just because you may have had babies doesn't mean you want your body dismantled and put out to pasture. Conversely, UFE is minimally invasive and highly effective. Instead of removing the fibroids through a hysterectomy, using a local anaesthetic a catheter is introduced to the femoral artery and fed through to the uterine artery where microparticules are released which find their way to the fibroid cutting off circulation. Within days the patient can be back to work, and within months the benign tumour dies due to the lack of blood and oxygen. It allows women a greater chance or remaining fertile, and for those who have had or do not wish to have children, allows for them to remain completely intact.

Sounds great doesn't it? Well, much the same way the insulin pump are falling behind the expected up take so is UFE. In fact the message from the day was all too familiar; that this superior technology with efficacy far greater than the invasive technologies of the past, is still very much kept on the down-low by many PCTs, rather than making options transparent and clear to the patients, no doubt already suffering from the side effects of the illness they are undergoing.

It was a great day and a positive reminder of all the work being done to educate, increase awareness and improve the experience of the patient, while reducing the cost demand on the NHS. I was glad to be there helping educate and raise awareness about the benefits of the pump and it was a great chance as always to talk all things diabetes with people who were not only prepared to listen, but were actually interested.