Today Future Health Research publishes Missing the moment: how NHS reform can better support people with advanced Parkinson’s, an independent report commissioned and funded by AbbVie.
Around 166,000 people in the UK are living with Parkinson’s. Through new health service and economic modelling we found:
- Between approximately 13,500 and 18,800 people in England are living with advanced Parkinson’s
- Hospital admissions and physician consultations for this group cost the NHS approximately £34 million to £47 million a year
- The largest cost falls on families: around 21 hours a week of unpaid care per person, valued at approximately £480 million to £670 million a year
The research also found that there is no agreed definition of advanced Parkinson’s, so this population is invisible in routine NHS data, and that the care pathway breaks down at predictable points, from identification through to end of life. Yet good practice already exists for every one of them.
The 10 Year Health Plan gives the NHS the opportunity and levers to change this. Our ten recommendations set out how, including an agreed definition of advanced Parkinson’s, a defined trigger for specialist review and a shared care record across the whole pathway.
Thank you to the clinicians, charities and professional bodies who gave their time to the research.
This post is intended for a UK parliamentary, policymaker, advocacy professional and health policy audience only.
UK-NEUP-260056| Date of preparation: November 2026
11 November 2026