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 estimate she has made of the amount of funding allocated to the research of Parkinson's disease over the next five years.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
The National Institute for Health and Care Research (NIHR) welcomes funding applications for research into any aspect of human health, including Parkinson’s disease. Future funding allocated to research into Parkinson’s disease, and into other aspects of human health, will depend on the volume and quality of proposals received from the research community, with the level of spending outlined in the end of year accounting.
The Department, through the NIHR, invested £12.2 million into Parkinson’s research over five financial years, ending in 2022/23. The NIHR has supported a broad portfolio of Parkinson’s research and, in the last year alone, supported the conduct of 114 studies relating to Parkinson’s disease through the NIHR Clinical Research Network. For example, the NIHR is investing £3 million in the PD MED clinical trial, which investigates the efficacy of different drugs in the treatment of Parkinson’s disease. The usual practice of the NIHR is not to ring-fence funds for expenditure on particular topics.
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.
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, if she will publish the waiting times from the point of a GP referral for a diagnosis of a patient with suspected Parkinson's Disease to the date of an appointment with a neurologist or geriatrician, by Integrated Care Board for the latest period for which that data is available.
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.
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.
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, with reference to the Answer by the Minister for Disabled People, Health and Work to the Question from the hon. Member for Kilmarnock and Loudoun on 13 November 2023, Official Report, column 371, when he plans to contact Parkinson's UK to arrange a meeting to discuss Work Capability Assessments.
Answered by Mims Davies - Minister of State (Department for Work and Pensions)
I have recently met with individuals diagnosed with Parkinson’s, and we continue to engage with a range of clinical experts and charities 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.
Written Evidence Apr. 26 2024
Inquiry: Disability employmentFound: DYE0050 - Disability employment Parkinson's UK Written Evidence
Asked by: Julian Sturdy (Conservative - York Outer)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps she is taking to ensure that there are sufficient numbers of Parkinson’s specialist nurses.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
Under the NHS Long Term Workforce Plan, backed by more than £2.4 billion over the next five years, the National Health Service will focus on expanding the number of clinicians, including nurses, who train to take up enhanced and advanced roles, and work as part of multidisciplinary teams with the right skills to meet the changing needs of patients. The ambition is to train at least 3,000 advanced practitioners in 2024 and 2025 across all specialties, and to increase the number in training to 5,000 a year by 2029. The Long Term Workforce Plan also sets out actions and reforms needed to improve workforce supply and retention.
Asked by: Julian Sturdy (Conservative - York Outer)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps she is taking to ensure that Parkinson’s specialist nurses are retained in the profession.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
Under the NHS Long Term Workforce Plan, backed by more than £2.4 billion over the next five years, the National Health Service will focus on expanding the number of clinicians, including nurses, who train to take up enhanced and advanced roles, and work as part of multidisciplinary teams with the right skills to meet the changing needs of patients. The ambition is to train at least 3,000 advanced practitioners in 2024 and 2025 across all specialties, and to increase the number in training to 5,000 a year by 2029. The Long Term Workforce Plan also sets out actions and reforms needed to improve workforce supply and retention.
Asked by: Baroness Gale (Labour - Life peer)
Question to the Department for Work and Pensions:
To ask His Majesty's Government what steps they are taking to provide targeted financial support for people with long-term conditions such as Parkinson’s disease during the cost of living crisis.
Answered by Viscount Younger of Leckie - Parliamentary Under-Secretary (Department for Work and Pensions)
The Government understands the pressures people are facing with the cost of living, including people with Parkinson’s disease. Over recent years, the government has demonstrated its commitment to supporting the most vulnerable with one of the largest support packages in Europe. The total support over 2022- 2025 to help households and individuals with higher bills amounts to £108 billion – an average of £3,800 per UK household.
We provided a Disability Cost of Living Payment of £150 in June/July 2023 to people in receipt of certain disability benefits such as Personal Independence Payment (PIP) or Disability Living Allowance (DLA). This is in addition to the £150 payment paid in September 2022.
We estimate that nearly 60 per cent of individuals who received an extra costs disability benefit would have received the means-tested benefit Cost of Living Payments, worth up to £900. Over 85 per cent would have received either or both of the means-tested and the £300 Pensioner Cost of Living Payment.
We also increased extra costs disability benefits by 10.1 per cent from April 2023 and by 6.7% from April 2024 in line with the Consumer Price Index.