Palliative care is about improving the quality of life for you, your family and loved ones, through managing symptoms, relieving pain and dealing with any other distressing aspects of Parkinson's.
Palliative care acts as an extra layer of support and can be given whatever age you are or stage of your condition.
It can play an important part of care when you are approaching the end of your life.
What does palliative care involve?
Palliative care is a holistic, or ‘whole person’, approach that will look at every aspect of your life.
It gives you some control and choice over areas such as treatment options and where you will be cared for, as well as advice and support to all the people involved in your care.
Palliative care must address physical problems, including pain, breathlessness, losing your appetite, immobility and constipation.
But it should also support the personal, social, psychological and spiritual needs of you and your family.
Who provides palliative care?
Palliative care can be given whether you’re at home, living in a care home or in hospital. It may be provided by a Parkinson's nurse who works with a multidisciplinary team for both day-to-day and specialist care.
In some areas, the local hospice or your GP can refer you to specialist palliative care teams. They can help with the management of complex symptoms.
Physiotherapists, occupational therapists, speech and language therapists and dietitians all have important roles to play in the advanced stages of Parkinson’s.
Being referred to specialist palliative care does not mean your usual Parkinson's team stops caring for you. Most specialist palliative care professionals will work alongside your Parkinson's nurse or specialist. They will work together to achieve the best quality of life for you.
A GP or Parkinson’s nurse will usually be involved in arranging palliative care.
Involving my family
Including your family in the early stages of your decision making will help you all feel more comfortable about the future. It also relieves them of the burden of second-guessing your wishes should you become unable to make decisions for yourself.
If your family have provided you with care and support, they should be considered as a key part of the multidisciplinary team involved in your palliative care.
When should I start thinking about palliative care?
It may be difficult to start thinking about palliative care, especially if you are young or only recently diagnosed. But it is important that you consider your options as early as you can.
This will help make sure your needs are met in the future and give you and your family peace of mind now. You can always review your options, as and when your condition changes.
Accessing palliative care services
Your GP, Parkinson's nurse or local hospice can refer you to a specialist palliative care team.
Hospices are a good source of information on what care options and services are available locally.
Hospice UK, the national charity for hospice care, provides details on hospice and palliative care, and information on finding hospices.
The National Association for Hospice at Home aims to deliver hospice-like services for those who wish to be cared for or die at home.