||The Sheffield Cystic Fibrosis Appeal was launched in February 2010 to provide a brand new unit for adult Cystic Fibrosis patients from across South Yorkshire and beyond. Until the launch of this fundraising appeal no such unit existed and patients had to undergo treatment in general medical wards that were not suited to their particular needs. Many patients delayed important treatment simply because they did not want to have to stay in hospital.
The Ward was officially opened by actress Jenny Agutter on Monday 12 December and the target total of £1 million has now been reached.
With your help, we can do more
Although the unit is now operational there are still plenty of items that require funding and we still need your help. So if you want to make a donation, buy a star on the Unit, or do some fundraising, do please get in touch. We would love to hear from you.
What is Cystic Fibrosis?
Cystic Fibrosis is one of the UK's most common life-threatening inherited diseases affecting some 8,000 children, teenagers and young adults. There is currently no cure for this condition, which primarily affects the lungs and the body’s ability to digest food and absorb nutrients. People with Cystic Fibrosis struggle with nutrition, growth and maintaining weight, and experience recurrent chest infections, which damage the lungs, making breathing difficult, leading to lung failure requiring a lung transplant or resulting in death.
Each week, five babies are born with Cystic Fibrosis and three young lives are lost to this debilitating disease.*
* Cystic Fibrosis Trust 2009.
The Sheffield Adult Cystic Fibrosis Unit
Treatment and care by specialists in regional centres of excellence, such as the existing Sheffield Adult Cystic Fibrosis Unit at the Northern General Hospital, has improved life expectancy from a mere 5 years in the 1960’s to an average of 35 years today. However, hospital treatment is complex & lengthy, and whilst in hospital patients are cut off from family and friends, often resulting in them falling behind with school, college and/or work.
The Sheffield Adult Cystic Fibrosis Unit was established 10 years ago and is now accredited by the Cystic Fibrosis Trust as a regional specialist centre. However, the unit did not have a dedicated ward in which inpatients (aged 16+) could receive treatment. As a result, patients were treated on a medical respiratory ward, which catered mainly for very elderly patients. This means that patients, who are often teenagers or young adults (ordinarily aged 16-35), were being treated for up to one month at a time, several times a year, on a ward which was not suitable for their clinical or personal needs.
Suffers of Cystic Fibrosis faced a whole host of difficulties when receiving inpatient treatment on a medical respiratory ward not specifically designed to accommodate their needs. These difficulties included:
- Fighting off infections. Patients found it difficult to fight off infections, which can be very debilitating for sufferers of Cystic Fibrosis and can often result in death. This means that patients must be placed in individual rooms but even at full capacity there was not enough beds available on the medical respiratory ward for the number of patients requiring treatment.
- Cystic Fibrosis care was provided by a multi-disciplinary team, which included consultants, specialist nurses, dieticians, physiotherapists, social workers, psychological & administrative support. However, nursing staff working on the medical respiratory ward have to work across a mixed workload requiring a range of nursing skills, rather than possessing a set of comprehensive skills to treat Cystic Fibrosis patients
- Inpatient treatment was provided in a medical respiratory ward, which was unsuitable given that it caters mainly for very elderly patients. The ward is also extremely tired and cramped, having last undergone a refurbishment more than 10 years ago.
Making a difference – the new unit
The Sheffield Cystic Fibrosis Appeal has helped completely transform both inpatient and outpatient care for the increasing number of young Cystic Fibrosis patients living in our region.
The only facility of its kind in the area, the new centre has been designed to meet the specific needs of young people, including free, high speed broadband to enable patients to continue their studies during hospital stays. The money we have raised to date has helped:
- Provide 12 individual inpatient rooms
- Vastly improve the patient environment, which has been shown to boost clinical outcomes**
- Help reduce the risk of cross-infection, which is especially important in Cystic Fibrosis patients
- Feel like a ‘home from home’ with private en-suite rooms
- Stop young people putting off vital treatment because of inadequate facilities
- Fund a team of specialist doctors, nurses, physiotherapists and dieticians, all focused on the needs of young people fighting this debilitating illness
- Offer a light and airy space for young people undergoing treatments which often require lengthy hospital stays
* * Research from the University of Nottingham showed that patients on refurbished wards were less stressed, needed fewer drugs and had faster recovery times than those who were recuperating on an older ward.
Real people, real lives…
Michael is 23 years old and last year married his fiancé Lyndsay. Michael has spent several weeks at a time on the medical respiratory ward and therefore is fully aware of the importance of the appeal:
“It's not nice going into hospital, but you could put up with it if you knew it was only going to be a day or two. As it is with us we're normally there for weeks rather than days and it does get quite depressing. It's a dreary place and it gets boring very quickly. We take our own stuff in, including our bedding and TV and DVD player, to try and make it as normal as possible. Although the staff are great, the facilities are not adequate for what we need.
Now that the new unit is open, Lyndsay and my parents do not have to worry as much and don't feel the pressure to have to come and see me every day, because they know I’m happier and busier and not just laid there staring at the walls. The new unit has a kitchen and internet access, which will mean that I can carry on with some of my work. It gives us back some independence and control over our condition and treatment. It doesn't feel like they're taking everything away from you when you get admitted to hospital. I think that's a big thing for young people and a big thing for your family too.”
27 year old Ruth Palmer looks after 2 small children with the help of her partner Craig, so when she required inpatient treatment before the new unit was built it was incredibly difficult for her small family. It was all the more difficult for the family knowing that Ruth had to receive her treatment in a cramped, dreary looking ward, with very little to keep her occupied during her often fortnightly stays.
The new unit has meant that Ruth’s family do not have to worry about her when she is admitted to hospital. Ruth commented after her first stay at the unit: “I can just come in and be looked after, which is what I need. It is more homely than medical so patients can relax and rest, at the same time as getting the care they need.”