Helen Tew from The Butterfy Trust

Helen Tew from "The Butterfly Trust" 18.45 for Chat 19.00 for Meet

There was a warm welcome from the Club for Helen Tew, a Trustee and former Director of the Butterfly Trust, who continues to work with the Trust as a Counsellor. The Trust, which started in 2002 with help from the government and Big Lottery, provides face-to-face social support across Scotland for people with cystic fibrosis. 

Helen explained that cystic fibrosis is a life-limiting condition caused by a faulty gene.  While there have been positive developments in treatment, the average life expectancy is currently 40, though many do not reach that age. It is a complex condition that affects many different organs but, in the early years, causes most problems in the lungs and the digestive system, resulting in repeated chest infections and difficulty in gaining weight.  Over time, the infections leave tissue damage in the lungs that can affect lung function. Physiotherapy and medication can, however, help to minimise the number of infections. Some older people with cystic fibrosis can develop arthritis, liver disease and diabetes and may need additional treatment.

Daily treatment is demanding on patients and for their family or carers.  It typically involves physiotherapy, usually twice a day, linked with medication, often needing to be nebulised, delivered up to five times a day.  In severe cases, intravenous antibiotics can be needed twice a day and during the night.

The Trust provides families with a listening ear and skilled support after diagnosis, offering them much-needed help in a variety of social work contexts.  This can range over practical issues such as advice on education and employment; securing transport for visits to hospital; offering emotional support for families and carers; providing help in securing access to safe housing; and seeking fair rates of disability benefits.  In addition, the Trust also has a befriending initiative where patients are matched with someone who can talk about aspects of daily life.  For those over 18, some of whom may be living alone, there is a mentoring service that can help to open up horizons and explore the scope for increasing life choices.  In addition, Helen added, volunteers from the Trust offer a massage therapy service that can encourage relaxation and relieve muscle tension.

Perhaps the best assessment comes from a mother:  “The support from Butterfly Trust has helped me hugely.  They listened and helped me to cope in difficult times and with the ups and downs of the children’ health and complicated treatment.   Just knowing the support is there helps me feel less stressed”.

President David Chisholm thanked Helen for her talk that had opened members’ eyes to the nature of this condition.  The Trust was obviously doing a very great deal to support patients.