Patient story – Neil Fow

north west icon North West Coast

Talking to Debbie, where she explained the concept of Connected Health Cities was great, it sounds like a very good idea.  Everyone has GPs and Hospitals that they deal with at some time and making sure everyone has the patients correct data would save lives I think.

I was first diagnosed with COPD about 15 years ago but think I had it about five years before that. I was not told initially that I had COPD, I found out through a booklet which was given to me by a nurse.  Not a good way to find out you have COPD.

I was never a smoker and think, because of my work and spending time in smoky offices and meeting rooms, this was probably the cause of my problems.  People always smoked in the meetings, often with all doors and windows closed.  Second hand smoke is now recognised but wasn’t then. The smoking ban has helped tremendously.

Nobody cares about this, or even really listens to me; they all assume I was a smoker and that my condition is self-inflicted.

I live in Leyland with my wife who has been diagnosed with Cancer and is currently undergoing chemotherapy and related treatment, this all puts extra pressure on us and we are both visiting hospitals and doctors regularly and can get frustrated at having to tell people our story over and over again.

My wife had IBS symptoms previously and was already under a hospital consultant.  On this occasion the system has worked really well with everyone being kept up to speed with her condition in between appointments because she was already a patient.  They acted very quickly on the cancer side and this saved time and messing about once the diagnosis was made.  The fact that all knew her previous condition was absolutely brilliant.

I am on various medications, but am not on oxygen.  A couple of years ago I had the roughest year ever with my problems being caused by airborne allergens.  The doctor changed my tablets for high blood pressure and this caused a real problem.   I had a bad reaction to the new tablets which mimicked the symptoms of a heart attack.  An ambulance was called and whilst I was struggling to breathe, panicking a little as I thought I was having a heart attack, I was bombarded with questions about my condition by the paramedics.  They were only doing their job and their best for me but having to tell them about my illness, the medication I was taking, whilst being very unwell, added to my stress, and that of my wife who was concerned about me.   How much better it would have been if they had had access to my medical history and perhaps this would have got me treatment quicker, who knows?

It is funny now, but wasn’t at the time, but I was once taken from Church to hospital via ambulance to A & E where the doctor thought I was a drug user!  If they could have seen my data it would have saved this confusion.  What the connected health cities project is trying to do sounds like a brilliant idea.

I think that sharing data is essential. Everything should be kept on a central computer, or somehow connected and GPs and hospitals should be able to pick up what each other is doing with every patient.  My only slight worry would be if companies such as insurance people had access.  I would only want my data sharing within the NHS departments and possibly anonymously to others like Cancer Research UK to help research for the future.

I go to a Breathe Easy group which has been extremely good for me.  I lose my voice a lot and was referred through the group to a speech therapist who knew the problem straight away: a dysfunctional larynx.  She knew exactly what to do and I had full confidence in her.  If what she did with me was shared with my GP and the hospital then that would be splendid.  I hope all this works out it will be great.

The opinions expressed here are my own personal views and do not reflect the views of the Innovation Agency, Connected Health Cities or any other organisation.

Patient stories highlight support for health data sharing