Parkinson’s UK Scotland supports legal right to palliative care under the right terms

We’ve supported the principle that everyone in Scotland who needs it should have a legal right to palliative care. But the new law needs additional funding and to be on the right terms for people with Parkinson’s and their families.

Miles Briggs, a Member of the Scottish Parliament (MSP) has proposed a new bill to give people of all ages in Scotland living with a terminal illness a legal right to palliative care.

Many people associate palliative care with cancer and think it is only used at the end of someone’s life. But palliative care includes much more than that. 

Palliative care:

  • can benefit anyone whose health is getting worse because of an incurable condition active treatment to manage the person’s condition often continues 
  • aims to meet the person’s physical, psychological, spiritual and social needs 
  • can be beneficial at any time from diagnosis. This may be years before someone dies
  • can include partners, family members and friends too.

Where do people with Parkinson’s currently stand?

We're concerned that people with Parkinson’s and their partners, family members and friends, often miss out on palliative care. We believe that this could help them cope with the tough times when someone’s Parkinson’s is getting worse. 

With the right care and support, people with Parkinson’s can live well for many years. However, some people with advanced Parkinson’s have poor quality of life. Their experience may be worse than people with conditions like cancer and motor neuron disease (MND), who are much more likely to be able to access palliative care. 

Specialist Parkinson’s services are overstretched, so they cannot offer all the support people need when someone’s health is getting worse. 

In Scotland, most people with Parkinson’s don’t have a plan for the support they would want if their condition were to get worse. Even among those who have advanced Parkinson’s, fewer than half (41%) have had a discussion with their Parkinson’s consultant or nurse about their future care in the past year. 

Research also shows that people with Parkinson’s are less able to access specialist palliative care services in the mainstream NHS or in hospices than those with other conditions. General hospital, community and social care services can offer high quality palliative care and support. But most are struggling to meet the basic needs of people with Parkinson’s, let alone provide holistic support when someone’s health is getting worse because of a complex brain condition. 

What we’re saying about this proposal 

We think that giving everyone who can benefit from palliative care a legal right to access it could help many more people with advanced Parkinson’s and their families to access the support they need. 

We have highlighted how people with brain conditions like Parkinson’s are often excluded from palliative care services. It may be even harder if they are older, more disabled or live in a remote area. 

We have identified barriers caused by using language like "terminal illness" in the bill. We know that this could prevent people with Parkinson’s accessing care and support because many people do not consider Parkinson’s to be a terminal condition. We have suggested alternative language to use instead. 

And we have said that access to palliative care can only be extended if there is additional funding to support it. Current NHS and social care services are already struggling to provide the basics. 

Tanith Muller, Parliamentary and Campaigns Manager for Parkinson’s UK Scotland, said: 

"We’re pleased to support a new legal right to palliative care in Scotland. Despite the fact that Parkinson’s is progressive and incurable, people often miss out on the type of person-centred, holistic care and support that those with other serious and life-changing conditions can access. 

"Many people with advanced Parkinson’s and their families feel that they are left to get on with it when their health deteriorates. It is high time that the impact of advanced Parkinson's was properly recognised, and people’s needs met. In the hardest of times, people should be able to access the care that they need, rather than having to struggle for any support that our overstretched health and care system can spare."

Advanced Parkinson's

The term 'advanced Parkinson's' usually refers to a time when your symptoms are more complex and have more of an effect on your day-to-day life.