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What is palliative care and when should it start?

Palliative care is about improving quality of life for you, your family and loved ones by managing your symptoms and relieving pain or any other distress you experience. It allows control and choice over certain aspects of your care, such as what treatment you receive and where this is given. As a holistic approach, palliative care also supports your emotional, psychological and spiritual needs.

Anyone, of any age, at any stage of an illness can receive palliative care, although it is particularly important towards the end of life. It can be given at home, in a care home, hospice or hospital. Depending on where you live, you may be cared for by a specialist palliative care team who are experienced in managing complex symptoms. Physiotherapists, occupational therapists, speech and language therapists, dieticians and counsellors can all play key roles in your care at this time.

It is important that your family is involved in decisions regarding your care and therefore become an integral part of your multidisciplinary team. This will help them to feel that they are doing all they can to help and to understand your wishes if you are no longer able to make decisions yourself.

When should palliative care start?

As Parkinson’s affects everyone differently and each person’s response to treatments tends to fluctuate, it is not possible to say when palliative care should start. This is a very individual decision but it should always take into account the views of everyone involved (including the multidisciplinary team) and the availability of resources. Treatment should be tailored to each individual and involve specialist palliative care professionals when they are needed, depending on availability.

Many people believe that palliative care should ideally start when Parkinson’s is diagnosed because many aspects can be applied throughout your journey with Parkinson’s. Applying the principles of palliative care sooner rather than later can mean that the final stages of life are better managed as you are already familiar with this style of care.

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