Mike Kane, MP for Wythenshawe and Sale East has joined national charity, the Cystic Fibrosis Trust today to visit the adult Cystic Fibrosis Unit based at University Hospital of South Manchester NHS Foundation Trust.
There are currently around 410 patients who access the adult regional CF centre in Manchester, from across the city and the North West region. The CF unit is one of only 24 specialist adult units across the UK and one of the largest of its kind.
Improved specialised treatment and care for those with Cystic Fibrosis has resulted in a growing number of patients surviving into adulthood resulting in a need for the development of such specialist units.
During the visit the Mr Kane visited the ward and chatted with patients about the condition and the specialist facilities provided. The unit includes a 22 bedded unit was designed with individual themes to provide patients with a ‘home from home’ with en-suite single rooms to ensure strict segregation between patients.
The unique layout means that all inpatient and outpatient activities can be routinely segregated to help avoid potentially fatal infections being passed from one CF patient to another. The majority of people with CF are advised to carry this segregation into their daily lives.
Because of cross infection risks, inpatients are required to remain in their rooms at all times for weeks at a time. To help prevent isolation the rooms contain exercise equipment, TVs and even computers so that patients can communicate with each other.
The MP also met with a multi-disciplinary team led by specialist consultants Professor Kevin Webb and Dr Andrew Jones. They work alongside specialist dieticians, physiotherapists, social workers, psychologists and nurses who are all vital in the care and monitoring of the condition.
Following the visit, Mike Kane MP said: “This specialist unit for adults, one of only 24 across the UK is clearly a vital and much needed resource for those suffering from Cystic Fibrosis.”
“It is invaluable as an MP to have the opportunity to meet with patients, their families and those involved in patient care. Hearing first-hand what the reality is on the ground for patients and consultants has given me a much clearer understanding of what Cystic Fibrosis is and the needs of patients and their families.”
Cystic Fibrosis affects nearly 10,000 people in the UK but, outside of its own community, it is a poorly understood condition. The disease is caused by a genetic defect and is a lifelong progressive and debilitating illness which affects the lungs and digestive system and the median life expectancy is just 36 years old.
To find out more about the work of the CF unit in Manchester please go to http://www.uhsm.nhs.uk/cysticfibrosis/Pages/home.aspx
Cystic Fibrosis Trust:
• Find out more at: cysticfibrosis.org.uk or call our helpline 0300 373 1000.
• Cystic fibrosis is a life-shortening genetic condition - only half live to celebrate their fortieth birthday.
• Cystic fibrosis directly affects around 10,000 people in the UK.
• The faulty gene is carried by over two million people in the UK, most of whom have no idea. If two carriers have children, there’s a one in four chance their child will have the condition, which slowly destroys the lungs and digestive system.
• People with cystic fibrosis often look perfectly healthy. But it’s a lifelong challenge involving a vast daily intake of drugs, time-consuming physiotherapy and isolation from others with the condition. It places a huge burden on those around them and the condition can critically escalate at any moment.