Apr. 11 2024
Source Page: Funding for Parkinson's Disease: FOI releaseFound: Funding for Parkinson's Disease: FOI release
Every person who is diagnosed with Parkinson's Disease should be automatically entitled to a Blue Badge for parking, rather than their eligibility being decided by their local authority.
Found: Parkinson's, especially Young Onset Parkinson's Disease (YOPD), affects many people of a working age.
Asked by: Daisy Cooper (Liberal Democrat - St Albans)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether advice given to a newly diagnosed Parkinson's Disease patient contains (a) contact details for a local Parkinson's nurse, (b) a date for a first appointment and (c) information on local support groups.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
The National Institute for Health and Care Excellence’s (NICE) guidelines on Parkinson’s disease in adults include recommendations for communication with people with Parkinson's disease, and their carers. The guidelines do not specify a particular leaflet, such as the one from Parkinson’s UK, but they do recommend that: communication with people with Parkinson's disease should aim towards empowering them to participate in judgements and choices about their own care; discussions should aim to achieve a balance between providing honest, realistic information about the condition, and promoting a feeling of optimism; because people with Parkinson's disease may develop impaired cognitive ability, and communication problems, they should be provided with both oral and written communication throughout the course of the disease, which should be individually tailored and reinforced as necessary, in a consistent manner; family members and carers should be advised about their right to a carer assessment, assessment for respite care, and other support; people with Parkinson's disease should have a comprehensive care plan agreed between the person, their family members and carers as appropriate, and specialist and secondary healthcare providers; and people with Parkinson's disease should have an accessible point of contact with specialist services, such as a Parkinson's disease nurse specialist.
The exact information that is provided to a newly diagnosed Parkinson’s patient will vary, but would usually include referral to a Parkinson’s nurse. Information about local support groups would usually be provided by the Parkinson’s nurse. The Department will explore whether anything further can be done to improve the provision of post-diagnosis patient information for those with Parkinson’s disease.
Asked by: Daisy Cooper (Liberal Democrat - St Albans)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what guidance is provided to clinicians on advising patients recently diagnosed with Parkinson's Disease; and whether that guidance recommends that patients be given a leaflet from Parkinson's UK.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
The National Institute for Health and Care Excellence’s (NICE) guidelines on Parkinson’s disease in adults include recommendations for communication with people with Parkinson's disease, and their carers. The guidelines do not specify a particular leaflet, such as the one from Parkinson’s UK, but they do recommend that: communication with people with Parkinson's disease should aim towards empowering them to participate in judgements and choices about their own care; discussions should aim to achieve a balance between providing honest, realistic information about the condition, and promoting a feeling of optimism; because people with Parkinson's disease may develop impaired cognitive ability, and communication problems, they should be provided with both oral and written communication throughout the course of the disease, which should be individually tailored and reinforced as necessary, in a consistent manner; family members and carers should be advised about their right to a carer assessment, assessment for respite care, and other support; people with Parkinson's disease should have a comprehensive care plan agreed between the person, their family members and carers as appropriate, and specialist and secondary healthcare providers; and people with Parkinson's disease should have an accessible point of contact with specialist services, such as a Parkinson's disease nurse specialist.
The exact information that is provided to a newly diagnosed Parkinson’s patient will vary, but would usually include referral to a Parkinson’s nurse. Information about local support groups would usually be provided by the Parkinson’s nurse. The Department will explore whether anything further can be done to improve the provision of post-diagnosis patient information for those with Parkinson’s disease.
Written Evidence Apr. 26 2024
Inquiry: Disability employmentFound: DYE0050 - Disability employment Parkinson's UK Written Evidence
Asked by: Alan Brown (Scottish National Party - Kilmarnock and Loudoun)
Question to the Department for Work and Pensions:
To ask the Secretary of State for Work and Pensions, pursuant to the Answer of 29 April 2024 to Question 23517 on Work Capability Assessment: Parkinson's Disease, when she (a) last met and (b) is next scheduled to meet representatives from Parkinson's UK.
Answered by Mims Davies - Minister of State (Department for Work and Pensions)
Ongoing engagement continues with a range of charities and clinical experts specialising in disability and health conditions as well as representatives from national organisations to understand the experiences of people with Parkinson’s going through the Work Capability Assessment.
Details of ministerial meetings are published quarterly on gov.uk in line with transparency data releases and can be found here.
Asked by: Mary Glindon (Labour - North Tyneside)
Question to the Department for Work and Pensions:
To ask the Secretary of State for Work and Pensions, if he will hold discussions with (a) the hon. Member for North Tyneside and (b) Parkinson's UK on the potential impact of the social security system on people living with Parkinson's disease.
Answered by Mims Davies - Minister of State (Department for Work and Pensions)
The Work Capability Assessment (WCA) assesses individuals against a set of descriptors to determine how their health condition or disability affects their ability to work. The WCA takes into account the functional effects of fluctuating and degenerative conditions such as Parkinson’s. A key principle is that the WCA considers the impact that a person’s disability or health condition has on them, not the condition itself.
Claimants with the most severe health conditions and disabilities whose condition is unlikely to ever improve are no longer routinely reassessed.
From 2025, we are reforming the WCA to reflect new flexibilities in the labour market and greater employment opportunities for disabled people and people with health conditions, whilst maintaining protections for those with the most significant conditions. Claimants who currently have no work-related requirements, except in some very limited circumstances, will not be reassessed or lose benefit because of these changes.
When making decisions on changes to the WCA, we carefully considered over 1300 consultation responses, including from disabled people, people with health conditions, and the organisations that represent and support them. We also engaged directly with clinical experts, employer groups and disability organisations across the country.
With these changes to the WCA criteria, 371,000 fewer people will be assessed as having limited capability for work and work-related activity by 2028-29 and will receive personalised support to help them move closer to employment. A further 29,000 individuals will be found fit for work by 2028-29 and will receive more intensive support to search for and secure work than would be the case under the current WCA rules. These figures are not based on specific conditions. This is because the WCA considers the impact that a person’s disability or health condition has on their ability to work, not the condition itself.
The department routinely engages with a wide range of organisations that represent and support disabled people and people with health conditions, including people living with Parkinson’s disease.
Asked by: Scott Benton (Independent - Blackpool South)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what assessment he has made of the implications for his policies of the finding on page 4 of the report entitled Every minute counts, published by Parkinson's UK in September 2023, that 42% of patients with Parkinson's who are admitted to hospital get their medication on time every time.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
Within secondary care, hospital providers are responsible for ensuring that patients within hospital settings, including those with Parkinson’s disease, receive the appropriate medication on time.
NHS England has published a RightCare toolkit which aims to address challenges in providing services for those with progressive neurological conditions, including Parkinson’s disease. The toolkit provides advice on medicine optimisation, highlighting the importance of timely administration of specific drugs, such as Levodopa, in acute and community health settings.
Asked by: Daisy Cooper (Liberal Democrat - St Albans)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, how many people with Parkinson's Disease are on waiting lists for a referral for diagnosis to a neurologist or geriatrician in each Integrated Care Board area as of 23 April 2024.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
Information is not held centrally on the waiting times from the point of general practice (GP) referral for a diagnosis of suspected Parkinson’s disease, to the date of appointment with a neurologist or geriatrician, by integrated care board.
Similarly, information is not held centrally on how many people with Parkinson’s disease are on waiting lists for a referral for diagnosis from a neurologist or geriatrician in each integrated care board area.
GP referrals are not classified by suspected diagnosis, so data is not available in the form requested. Not all patients referred to a neurologist or geriatrician with suspected Parkinson’s disease will go on to receive a diagnosis of Parkinson’s disease, while some receive other diagnoses.