August 2

I am now getting ready for Stage 2: Bodmin to Worcester.  I am starting this on 10 August (when the next blog will be published, provided there is internet access from the middle of Bodmin Moor).  As I type this it is pouring with rain, with floods in Northern England so I hope the sun comes out in 10 days time!!

The first 150 miles went well and I can unreservedly recommend the SW coast path to anyone who likes cliff walking. The next stage will take me across Bodmin Moor, across to Okehampton then North to the South Western edge of Exmoor.  I will then traverse Exmoor, the Quantock Hills before turning East over the Somerset Levels. I then turn North to Bath.  Finally I will spend 3 days on the Cotswold way before deviating North-west to the Malvern Hills and finally reach Worcester by the beginning of September.  After a short break I will head North along the Severn before joining the Staffordshire Way to Ilam. I then cross the Peak District to end this year’s jaunt at Edale.

If you are holidaying along the route then please get in touch and meet up.  After talking to the Manchester CF team we are going to organise a CF day walk, at the moment I anticipate this will be next May to coincide with me starting the Pennine Way and be from Edale to Glossop, where there are train links to the start and finish.

To remind you about Cystic Fibrosis:

Cystic Fibrosis

Cystic Fibrosis (CF) is a common genetic condition where the body’s normal secretions (mucus) are thicker than normal.  This affects many organ systems but particularly the lung and digestive tract.  This is a life-long disorder usually starting in early childhood with recurrent chest infections requiring repeated hospital admissions. More than 10 000 people have this condition in the UK and most children born with CF will now reach adulthood. For more information see cysticfibrosis.org.uk.

Thirty years ago, it was rare for these patients to live into their 40s. With improvements in drug treatment, some patients are living into their 60s but many still die at a young age.  Their life is complicated by recurrent chest infections and problems with nutrition and diabetes because of pancreatic failure amongst others.  They require repeated admissions to hospital because of these problems and need rigorous daily physiotherapy to maintain their lung function. A significant number end up on the lung transplant list and many of these patients will die because of lack of donors.

Promising genetic therapies are being developed  At present, there is a bid by the Cystic Fibrosis Trust to get some new therapies accepted by NICE, one new drug treatment (Vertex) is the cause of much controversy as it is not currently available in England as NHS England argue over the price of the drug being asked by the company.

Despite all these problems these young men and women are very resilient.  With support from their employers most can work. Many will go through higher education. There are some of our patients who have undergone lung transplantation and have competed at the Transplant Games.

Useful links:

Manchester cystic fibrosis centre:               https://www.facebook.com/macfc.uhsm

Cystic Fibrosis Trust:                                 https://www.cysticfibrosis.org.uk

British Society of Interventional Radiology: https://www.bsir.org