Supporting people with lung conditions, as the real experts in their lives, to self manage.
There are over 118,500 people in Scotland diagnosed with Chronic Obstructive Pulmonary Disease (COPD) and 72,000 children in Scotland receiving treatment for asthma. Chest illnesses of various kinds are the biggest single reason people use the NHS.
Chest Heart & Stroke Scotland (CHSS) were delighted then to launch www.MyLungsMyLife.org recently, a free and user-friendly website for anyone living with COPD, asthma and for parents/guardians of children with asthma. It includes information on diagnosis, treatment, film clips showing the correct use of inhalers, audio clips of relaxation techniques and practical self management tips.
For us, the guiding principles for all our resources and activities supporting self management (as with the SelfHelp4Stroke resource we’ve also just launched) are using real experts, the evidence-base and lived experience.
That inevitably means professional experts and, crucially, real patients and people! My Lungs My Life was written by respiratory specialists across NHS Scotland and independently reviewed by respiratory clinicians and people living with COPD and asthma.
We also believe firmly in the power of collaboration and we worked with NHS Education for Scotland, British Lung Foundation and the University of Edinburgh to produce the resource which was funded by the Scottish Government.
Whilst even self management resources of this calibre shouldn’t replace contact with healthcare professionals, they can make a huge positive difference to health and quality of life. If people understand more about their condition and some of the myths are removed, they can look after themselves much better, learn to know their own warning signs and reduce the chances of hospital or emergency admissions.
We also believe in enabling those who are interested to go a step further and influence self management services and also have their say on health and social care policy.
Our free COSMIC (Champions of Self Management in Care) workshops for people living with the effects of long term conditions or their carers and friends has developed a Scotland–wide network of public representatives with the skills and confidence to work with health and social care services.
COSMIC is part of our renowned Voices Scotland programme which can also support professionals to develop effective public involvement and learn more about the public perspective.
We welcomed the Scottish Government announcement in June 2014 of the ‘Stronger Voice’ initiative, which the Scottish Health Council, a lead partner, describe as “a commitment across health and social care services, and with policy makers, to relinquish the power and influence necessary to ensure that people using services will be at the centre of how we design, deliver and measure the success of those services”.
As a member, we are pleased that the ALLIANCE are a strategic partner in Stronger Voice, and we want to feed in our significant experience and expertise to support the ambitious objective.
Empowering people with long term conditions to self manage in genuine partnership with professionals whilst using the power of their insight and experience to improve policies and services is becoming an increasingly essential part of meeting Scotland’s health challenges.