A Consultation on the Draft Respiratory Care Action Plan for Scotland

taking care to listen and diagnose all the factors that could be affecting breathing and coughing. eg include gastric problems such as reflux when assessing and treating. too often people are treated as if there is only one cause for chest tightness when like me they may have 5 causes! it took 10 years to diagnose all that has been going on and of course getting worse over that decade.

hugely needed especially for people mentally affected by the medication they take to help with breathing etc but also for people who are progressively ill and have probable shortened lifespan due to respiratory illness.

imperative that this is smooth and without delay. ie transitional and not staggered and stop and start with a huge long gap in access to service.

too often people are left with no help for respiratory illness end of life support. as if eg genetic or cancer are more 'deserving' of care.

ACP's are only as useful as the quality and veracity of diagnoses and speed of diagnosis.

Unpaid carers need supported to support the patient because otherwise 1. they make decisions and assumptions based on wrong information and this can be a strong influence on people's ability to self care and manage 2. the job of caring is a big responsibility and people need help to cope with responsibility and help to be good and correct in how they care for and support the patient

removing inequalities requires all of the above; however it also requires COMMITMENT TO supporting 3rd sector resources in order to create a sustainable environment for the care and support they provide. 'look to' and 'striving to' is not enough. eg reaching people In remote and rural areas requires travel costs and subsistence costs; it is imperative that people get these to be able to access equally.

Data must reflect the reality of pockets of inequalities in Scotland - reporting data that is an average of an area that includes well off and poor in one small area is not fair or just to the poor and is not addressing the inequality issues they are suffering. a format that allows variation within an area to be illustrated is needed or a format where geographical areas are small enough to record the variations and inequalities.

integrated care for people who have multiple health issues is much needed especially when working on prevention and self care and treatment. eg my heart consultant wasn't interested in hearing about my respiratory problems therefore totally dismissing the impact the respiratory meds have in exacerbating my heart problems ( I have 3 ) and now I have heart failure as a result. equally it is only after an 2o year wait to see a tertiary service practitioner that it was agreed that I need not suffer the long term debilitating effects of steroids to my mental health by finding a different combination of meds. 20 years of bouts of psychosis and depression have been avoidable if anyone had cared to listen and think out side their box.

more support to cope with the mental health aspects of living with respiratory disease and other health problems

more people will be identified as 'difficult to control' respiratory problems and therefore will get the support and treatment they need much sooner; people will be off work ill a lot less; people will be able to live longer; people will have more income and money to save towards the days they are unwell and older age. more people will feel listened to. more people will feel cared for and treated with respect and dignity instead of being left to manage with inadequate diagnoses and damaging treatments; money will be saved at NHS. people will be more productive through being valued more. health staff will be have better outcomes for more patients if they are learning and thinking about the whole person instead of only their lungs. health staff will feel more useful and productive. again money will be saved.