“The beginning of the dying process is the first cigarette in the bicycle shed at the age of 12”
There are around 15 million people in England with at least one long term condition – like diabetes, MS, Parkinsons, asthma, arthritis, lung and heart disease. There are half a million in Northern Ireland and the same in Scotland. These are conditions that can be managed but not cured.
Improving end of life care
Research on improving end of life care for people with chronic lung or chest disease shows how challenging it can be for doctors to stick with accepted good practice and flag up the ‘end phase’ to patients. Cancer often has a clear point of diagnosis to begin difficult discussions and a more predictable path. Long term conditions creep up on patients. The fact that they can last a long time and be unpredictable means that there’s no clear beginning and an unanticipated end.
Research suggests that doctors need to try a different tack: identify milestones – like hospital admission or retirement on medical grounds – and use these as staging posts to discuss care and treatment and prepare for the end, even if it’s indeterminate.
The impact on carers
This piece of research shows that the psychological and spiritual stress of living with lung cancer is mirrored by carers. “Why me?” was a common shared response at particular milestones: the point of diagnosis, after initial treatment, after a recurrence and during the terminal stage. The disease impacts on the carer’s health and ability to care-give and this important research urges the medical profession to take account of carers’ need for support throughout the period of illness, not just in the terminal phase as currently happens.
England & Wales
Department of Health
Scotland: Alliance Scotland has an excellent directory of support organisations. Their campaign, My Condition, My Life encourages you to be in the driving seat in your life and has its own website.
My Condition My Life – support organisations
Northern Ireland: represents 500,000 people living with long term conditions.
Long Term Care Alliance
Support for common illnesses and conditions
Maggie’s centres provide care centres for people with cancer.
MacMillan Cancer Support provides help to improve the lives of people with cancer.
Marie Curie Cancer Care provides free care in the home for people with cancer and other conditions.
National Institute for Clinical Excellence: Improving Supportive and Palliative Care for Adults with Cancer
See 10 ways to fight cancer report here.
NHS Heart Improvement Programme: Supportive and Palliative Care in Heart Failure
Scottish Partnership for Palliative Care: Living and Dying with Advanced Heart Failure: A Palliative Care Approach
See 7 ways to a healthier heart report here.
Chronic lung disease
Chronic kidney disease
National Kidney Federation A Working Definition of End of Life Care from National End of Life Strategy
Scotland has a world leading dementia strategy. See the Two Year On report of 2012 for progress.
Dementia Strategy Report
For the rest of the UK, see the NHS Department of Health: Living Well with Dementia: A National Dementia Strategy. Alzheimer’s Society, working with home-care specialists, have developed a training resource to help home-care workers provide the best care for people living with dementia. Email or call 01904 633581 for info.
End of life care
Professor Scott Murray is a leading authority on end of life care. Research by him and others features on the British Medical Journal’s website. These reports are quite understandable for the average non-medic and provide riveting insights that will help shape future care in the UK and further afield. This short film featuring Prof Scott Murray tells how stressors around end of life vary depending on local conditions.
Drug and alcohol use
The impact of drug and alcohol use can be devastating on families and communities. There are Community Addiction Teams in most areas, accessible through the local council or NHS. Talk to your GP as a starting point. Get help. There are Family Support Groups to support those impacted by drug and alcohol use, offering an ear, respite from stress through informal meetings, others who understand. 12 step groups, Al-Anon, Families Anonymous – all provide a safe space to ‘let go’.