That's the powerful message from this year's Dying Matters Awareness Week.
How and where you or your loved one dies is a hugely important issue. To die with dignity in the place of our choice is something we all hope for but all too often, understandably, put to the back of our minds.
While many of us aren't desperate to confront these difficult issues, for people with Parkinson's and other long-term conditions this is something that sooner or later they will have to face. While Parkinson's doesn't directly cause people to die, symptoms do get worse over time which can affect a person's ability to make decisions. So the sooner someone can express their wishes and make plans, the better.
The majority of people with Parkinson's would prefer to die at home but research suggests they are more likely to die in hospital. That's why at Parkinson's UK we are calling for more work to be done to help people communicate their wishes about their death in the early stages of the condition and for significant investment in community services to allow those who wish to die at home to do so.
It is particularly pertinent to be discussing choice at the end of life given the current political context. Under the coalition government, the then Minister for Care and Support Norman Lamb MP was spearheading attempts to create a policy for free social care at the end of life, with the aim of increasing the number of people who are able to die in their place of choice.
Furthermore, only back in March the Health Select Committee recommended giving people free social care at the end of life for this purpose.
Far from falling between in the political cracks that can form following a change of government, the Conservative manifesto committed to enabling commissioners to better combine health and social care services so that people are able to die in a place of their choice.
However, while we welcome this attention on such an important issue, particularly the commitments regarding free end of life social care, the system as it stands is culturally in the dark ages in its capacity to assess anyone who doesn't have cancer as being at the end of their life.
Owing to difficulties with non-specialist health and social care professionals being able to accurately identify people with Parkinson's at the end of life, huge numbers of people with Parkinson's lie unidentified meaning they would often fail to get access to this support. Unless there is a seismic cultural shift among clinicians, which has to be led by NHS England, to initiate conversations about this difficult and sensitive issue, little will change and people with Parkinson's will continue to have their wishes ignored.
We will continue to work alongside the government to ensure that people with Parkinson's aren't neglected by any potential new policy. After all, you only die once...Suggest a correction