A new bill that will change how health and care is planned and delivered in England was debated in parliament yesterday (14 July 2021)
The government has introduced legislation that will move to a more collaborative way of working across health and care services.
It is hoped these changes will lead to health and care that is planned around a person’s individual needs, as well as addressing the fragmented nature of today’s system to make care more joined up.
These changes will be delivered through new organisations called Integrated Care Systems, that bring together leaders from health and social care to plan and organise services in their area. These are currently working on a voluntary basis.
The bill will turn them into statutory bodies that will be accountable to local politicians and people who use health and care services for how they operate.
How might this impact health and social care for people with Parkinson’s?
We hear stories every day of people with Parkinson’s having difficulties navigating the health and social care system to get the care and treatment they need and deserve.
Often having to re-tell their story again and again to each health professional they see. Parkinson’s is degenerative so every exhausting delay can be disastrous.
We are therefore supportive of the intentions of the bill to achieve a more person-centred joined-up approach to care.
This bill seeks to join up services both within the NHS and between the NHS and social care in England.
However, we have some key concerns which we believe will act as a barrier to making joined up, person-centred care a reality.
- Not involving people with Parkinson’s in decision making
There is very little in the legislation currently to improve how people with health conditions will be involved in making decisions about how their health and social care services are planned and organised.
We know from local campaigning activity involving people with Parkinson’s, their voice and requirements have often been ignored, when it comes to local service improvement and provisions. We want to make sure the new bill makes provisions so those who are directly affected by Parkinson's and other health conditions are part of the decision making processes.
- Access to advanced treatments for Parkinson’s
‘Specialised’ treatments, such as Duodopa and deep brain stimulation, are currently commissioned centrally by NHS England but may be commissioned locally by Integrated Care Systems in the future.
There is a risk this could worsen access to these life-changing treatments for people with Parkinson’s, since there is no guarantee current levels of spending on these services will be maintained.
- Ensuring we have the health and social care professionals we need now and in the future
Shortages of health and social care professionals has been felt by people with Parkinson’s during the pandemic, with many specialist health professionals being redeployed.
We do not believe that the bill, as it stands, goes far enough to improve workforce planning, to ensure we have enough health and social care professionals to meet the needs of people with Parkinson’s now and in the future.
This is of particular concern because Parkinson's is the fastest growing neurological condition in the world.
What is Parkinson's UK doing?
Parkinson’s UK briefed MPs ahead of the first debate of the bill in parliament on Wednesday 14 July.
We will be following the progress of the bill as it passes through Parliament and we will be working with other organisations who have similar concerns to push for changes to the bill.
What can you do?
We are continually looking for people to get involved in our campaigns to improve health and care services for people with Parkinson’s.