Our response to the Scottish Government’s consultation on long-term conditions

In our response to the Scottish Government’s consultation on a new long term conditions framework, we told decision-makers that they must protect specialist healthcare services and support for people with Parkinson’s.

The Scottish Government is considering replacing condition-specific action plans for neurological conditions, cancer, heart disease, and stroke with a single strategy.

We have serious concerns about what this change could mean for how health and care are funded and delivered across Scotland. Especially at a time when we know specialist Parkinson’s services are already stretched.

Healthcare challenges for people with Parkinson's

In a survey of 248 people with Parkinson’s and their care partners, 99% told us that access to specialist healthcare was important.

Many people got in touch to tell us that expert support from their consultant and Parkinson’s nurse was invaluable. But many also said they face barriers that make it difficult to navigate the healthcare system and get the support they need.

These challenges include:

• appointments and communication with doctors and nurses are too short or infrequent

• long waiting times to see wider services like occupational therapy and mental health support

• a lack of understanding across healthcare services about Parkinson’s and the complicated ways it affects physical and mental health

• a lack of information about how people can manage their Parkinson’s and what support is available.

People also told us that non-medical support and activities were important for supporting their wellbeing. The survey showed a strong preference for exercise classes and social support groups for people with Parkinson's. People told us these groups were most helpful when they were built around a shared sense of experience and peer support.

Our response to the consultation

In our response, we called for decision makers to:

• protect specialist healthcare services, recognising that access to specialist care is essential for people with Parkinson’s and other complex conditions

• address specialist doctor and nursing shortages that are making it difficult for people with Parkinson’s to receive timely diagnosis and quality care and support

• improve access to multi-disciplinary care for people with Parkinson’s, including mental health support, physiotherapy and occupational therapy

• improve access to physical exercise and social support, and make sure community services like sports and leisure trusts have greater awareness and understanding of complex conditions like Parkinson’s

• use digital technology to improve care and make sure that people receive the right information and support at diagnosis and beyond.

There are things that the Scottish government, councils and the NHS can do to support people with a range of conditions to look after their health, like making it easier to take part in physical activity and exercise classes in their local area and improving digital healthcare. 

We want them to work with us and other charities to increase people’s access to the right care and support. But we’re clear that this work must complement, not reduce or replace, expert and specialist care for conditions like Parkinson’s.

In the months ahead, we’ll be continuing to campaign for the government and decision-makers to protect specialist healthcare and support across Scotland. 

Read our full response to the Scottish Government's consultation (PDF, 386KB).