Patient Support Groups – A Valuable Resource To Patients And Families

Friday 18th May 2018

Adam Sullivan CEO Baywater Healthcare

The evolution of the Patient Support Group has created a valuable resource for patients and their families. Many of these organisations have been around for years, but the recent growth in their profile, scope and breadth of knowledge has created an ongoing support network for those with long term conditions. I have witnessed the amazing work carried out by the British Lung Foundation (BLF), Asthma UK, The Cystic Fibrosis Trust and The Pulmonary Hypertension Association as they strive to make people aware of the health conditions that affect their members. They have tirelessly lobbied for an improvement to environmental and lifestyle factors which can adversely affect sufferers. In addition, they campaign to create a better world for the next generation to reduce the probability of our children being affected by one of these debilitating and sometimes life limiting illnesses.

Unfortunately, these particular charities do not have the same draw as the likes of Macmillan or Great Ormond Street whose campaigns successfully tug at our heart strings and encourage us to pull out our debit cards or embark on a charity event to raise funds. Lung health sadly does not have the same impact, due to a lack of public awareness and an inability to relate to these conditions. Yet lung disease is the third largest killer in the UK behind heart disease and cancer, accounting for 115,000 deaths every year, though we don’t talk about the cause and effect in the same way we do about cardiovascular disease. Over the last ten years, survival rates from heart disease and cancer have dramatically improved due to increased awareness and an improvement in treatment regimes. However, the mortality rate for lung conditions has remained static and that simply cannot be right in a developed nation.

The BLF campaign has worked hard for improvements in lung health, be it for better air quality on our streets or a ban on smoking in cars. As a child brought up in a family of smokers, I grew up in an environment where the lingering smell of cigarettes was everywhere. Some of my worst memories are the long car journeys spent in the company of smokers. Even forty years on, the thought of having been subjected to hours in a cloudy box full of stale smoke, still turns  my stomach. However, we have seen significant changes in just ten years since the general smoking ban in public places and now most of society are fully accepting of the anti-social and negative impact smoking can have on others. A recent trip abroad where smoking is still acceptable in restaurants made me realise just how far we’ve come.

At Baywater Healthcare we run a series of Patient Group Forums throughout the year. Patients are invited to attend these educational sessions where experts from the field of lung health discuss the condition, the therapy regime and how staying active can help improve overall mental and physical wellbeing. However, one of the greatest benefits is the ability to meet other people in the same situation, especially those who have embraced their treatment and have seen the many positive benefits. Sharing experiences and realising that you are not alone can be a huge motivator for many and gives  them hope.

Patient charities such as the BLF have a wealth of information for patients and their families to support them through their condition and to ensure they make the right choices whilst they are undergoing treatment. Their website is full of inspiring stories, educational material and case studies to help those with a lung condition. To further enhance the level of care, a multi group taskforce on lung health has recently been established. By the end of 2018 The British Pharmaceutical Industry and the BLF along with a wide number of other patient groups and clinical organisations aim to produce a new national five year plan focussing on the prevention, diagnosis and treatment of lung health. If the taskforce get it right, it will help to ensure that the 12 million people affected by lung disease will receive the outcomes they deserve.

More information on respiratory disease and the new taskforce on lung health can be found at www.blf.org.uk