Patient story – Carol Liddle

north west icon North West Coast

Hi, I’m Carol.  I have COPD with severe emphysemic changes.  I am 56 and although I was officially diagnosed two years ago, I know I had the disease for about 5 years before that.  I knew because my mum had the disease and carried the Alpha 1 gene.  I have been tested for the gene and so has my daughter Natasha who, thankfully was negative.  Alpha-1 may result in serious lung disease in adults and/or liver disease at any age and is hereditary, the gene is passed on by both parents.

I do not let COPD define me and I am involved in many activities to help my condition and to help others.

Many areas have ‘Breathe Easy’ groups but we heard about how singing improves breathing and oxygen levels when you are taught breathing techniques.  We formed ‘Wigan Warblers’ last January and meet every Tuesday.  The group has grown from strength to strength and not only helps those with breathing problems but now also includes many with mental health problems.  Singing is a fantastic way of improving your wellbeing and health and just getting out of the house and meeting people has helped me too.  Isolation when you are ill is a big problem.

My lung capacity which was less than 2 cans of coke in February I was told, has improved by about 5% since I have been singing.  I can now walk up my stairs at home and although breathless at the top, I no longer have to stop after every 2 or 3 stairs to rest.  I have had no exacerbations in my condition since last March, this can’t be a coincidence.  Recently I visited Southport Air Show and was able to walk along the beach only sitting down twice.  This is something I have not been able to do in a long time.

I recently met a COPD athlete, Russell Winwood, who runs marathons and he visited our group from his home in Europe.  He has encouraged me to start a walking group and along with health professionals who will advise us, we are organising to walk to the summit of Snowdon next April.  We will have lots of support and Russell has said he will join us after running the London Marathon!  We have had support to buy instruments from our local Councillors and are in the process of applying for a community grant to help us.

I am currently under my GP, Wigan Infirmary and Wythenshawe Hospital in Manchester.  After lots of tests, scans etc, I was sent to Manchester for an assessment to see if I was suitable for a lung transplant.  Because of my condition, I am unable to use public transport and hospital transport was unable to get me there on time for my appointment so I paid £70 for a taxi.  When I arrived my test results were not there so they did a blood test and sent me home.  What a waste of money!  There should be a way that my health details can be seen by any health professional that needs them using modern technology and computers.  Many people are frightened of people sharing their data, whether anonymously or not but as a patient with a severe illness, I am all for them sending my health records to the hospital via computer.  This would mean situations like mine and not being able to find my records would never happen.   People put all sorts of information on Facebook and Twitter and don’t seem concerned as sharing this but are reluctant to share their health data with professionals.  This doesn’t make sense to me!

Personally, I don’t mind my health data being shared with professionals for research but I think I would want to choose who else was able to access it.  I would like to think that using my condition and information about me and my lifestyle etc. would help future generations so that this horrible disease can be cured or even better prevented and that my care could be planned better.

Having been a smoker, working in pubs before the smoking ban and also having a coal fire at home have all contributed towards my condition.  If research had not been done the smoking ban may not be in place and many many more people would be suffering like me.

I am determined to keep active, my pulmonary rehab, Wigan Warblers and walking will all help me to have better quality of life.  I hope sharing my information and my story will help others too.

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