Found: DYE0050 - Disability employment Parkinson's UK Written Evidence

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what funding the (a) National Institute for Health and Care Research and (b) UK Research Institute has provided for Parkinson's research in each of the last five years.

Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)

The Government’s responsibility for delivering Parkinson’s disease research is shared between the Department of Health and Social Care, with research delivered by the National Institute for Health and Care Research (NIHR), and the Department for Science, Innovation and Technology (DSIT), with research delivered via UK Research and Innovation (UKRI). Between the financial years 2019/20 and 2023/24, the Department of Health and Social Care, via the NIHR, funded Parkinson’s research projects to a total value of £12.9 million of programme spend.

As well as funding research itself, the NIHR invests significantly in research expertise and capacity, specialist facilities, support services, and collaborations, to support and deliver research in England. Collectively this forms the NIHR’s infrastructure. The NIHR’s infrastructure enables the country’s leading experts to develop and deliver high-quality translational, clinical, and applied research into Parkinson’s disease. For example, in the financial year 2022/23, the NIHR Clinical Research Network supported 114 studies related to Parkinson’s disease. UKRI spent over £66 million on research into Parkinson’s disease between the financial years 2019/20 and 2023/24. The following table shows the breakdown of spend on Parkinson's research for the NIHR and UKRI, each year from 2019/20 to 2023/24:

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.

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, if she will make an assessment of the potential merits of implementing a Parkinson's Passport that would give automatic access to clearly defined benefits.

Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)

The Department is currently exploring the feasibility of this, and the other asks within the charter.

The Department for Work and Pensions offers Personal Independence Payments (PIP) to individuals with health conditions or disabilities. However, there is currently no automatic entitlement to PIP in relation to specific health conditions, except in cases of people nearing the end of life, specifically the last year of life. The Government understands that there are people with severe and lifelong health conditions which will not improve. Guidance ensures that those on the highest level of support, whose needs will not improve, receive an ongoing award with a light-touch review at the 10-year point.

The primary focus of the Department for Transport’s Blue Badge scheme is to help those with the greatest mobility needs. Eligibility is not based on the type of disability. There are several automatic qualifying criteria for a Blue Badge, such as being in receipt of PIP because you cannot walk more than 50 metres. People who do not automatically qualify for a Blue Badge may still be eligible for a badge through further assessment.

With regards to free prescriptions, approximately 89% of prescription items are currently dispensed free of charge, and there is a wide range of exemptions from prescription charges already in place. People with Parkinson’s disease who are 60 years old or over are entitled to free prescriptions. For those that have to pay for prescriptions, the cost can be capped by purchasing a pre-payment certificate, which can be paid for in instalments. Additionally, the NHS Low Income Scheme can provide help with health costs on an income-related basis.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Question to the Department for Work and Pensions:

To ask His Majesty's Government what steps they are taking to ensure the Household Support Fund meets the needs of people with Parkinson’s disease.

Answered by Viscount Younger of Leckie - Parliamentary Under-Secretary (Department for Work and Pensions)

The Household Support Fund (HSF) is a scheme run by Upper Tier Local Authorities in England to provide support to those most in need towards the cost of essentials. Local Authorities have the discretion to design their own local schemes within the parameters of the guidance and grant determination set out for them by the Department for Work and Pensions (DWP).

The Household Support Fund is an intentionally flexible scheme, designed to enable Local Authorities to respond to local need. Local Authorities have the ties and knowledge to best determine how this support should be provided to their local communities.

We encourage Local Authorities to consider a wide range of households who are potentially in need of support, including families with children, pensioners, unpaid carers, care leavers and disabled people. Local Authorities have the flexibility to deliver the scheme through a variety of routes, including offering vouchers to households, directly providing food, or issuing grants to third parties. It is for each local council to decide how, where and when they distribute their funding and to ensure that it is accessible to those who need it.

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 health and social care professionals are trained in Parkinson’s-related dementia care.

Answered by Helen Whately - Minister of State (Department of Health and Social Care)

The standard of training for health care professionals is the responsibility of the health care independent statutory regulatory bodies. They set the outcome standards expected at undergraduate level and approve courses and Higher Education Institutions to write and teach the curricula content that enables their students to meet the regulators outcome standards.

Whilst not all curricula may necessarily highlight a specific condition, they all nevertheless emphasize the skills and approaches a health care practitioner must develop in order to ensure accurate and timely diagnoses and treatment plans for their patients, including for dementia.

Individual employers across health and social care are responsible for ensuring their staff are trained and competent to carry out their role, and for investing in the future of their staff by providing continuing professional development (CPD) funding. The required training needs are set out in the Dementia Training Standards Framework, which is available at the following link:

https://www.skillsforhealth.org.uk/info-hub/dementia-2015-updated-2018/

The framework was commissioned and funded by the Department, and developed in collaboration with the sector. It sets out the essential knowledge, skills, and expected learning outcomes applicable across the health and care spectrum.

It is applicable to health and social care staff who work with people living with dementia, staff providing direct care and support, and those who provide leadership in transforming care, including social care managers and leaders.

To supplement local National Health Service employer investment for CPD, the NHS Long Term Workforce Plan, published on 30 June 2023, sets out NHS England’s commitment to continue national CPD funding for nurses, midwives, and allied health professionals. There are a variety of resources available on the NHS England e-learning for health platform, designed to enhance the training and education of the health and social care workforce. This includes a programme on dementia care, and modules in Parkinson’s disease in geriatric medicine.

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps her Department is taking to provide training in Parkinson’s-related dementia care for health and social care professionals.

Answered by Helen Whately - Minister of State (Department of Health and Social Care)

The standard of training for health care professionals is the responsibility of the health care independent statutory regulatory bodies. They set the outcome standards expected at undergraduate level and approve courses and Higher Education Institutions to write and teach the curricula content that enables their students to meet the regulators outcome standards.

Whilst not all curricula may necessarily highlight a specific condition, they all nevertheless emphasize the skills and approaches a health care practitioner must develop in order to ensure accurate and timely diagnoses and treatment plans for their patients, including for dementia.

Individual employers across health and social care are responsible for ensuring their staff are trained and competent to carry out their role, and for investing in the future of their staff by providing continuing professional development (CPD) funding. The required training needs are set out in the Dementia Training Standards Framework, which is available at the following link:

https://www.skillsforhealth.org.uk/info-hub/dementia-2015-updated-2018/

The framework was commissioned and funded by the Department, and developed in collaboration with the sector. It sets out the essential knowledge, skills, and expected learning outcomes applicable across the health and care spectrum.

It is applicable to health and social care staff who work with people living with dementia, staff providing direct care and support, and those who provide leadership in transforming care, including social care managers and leaders.

To supplement local National Health Service employer investment for CPD, the NHS Long Term Workforce Plan, published on 30 June 2023, sets out NHS England’s commitment to continue national CPD funding for nurses, midwives, and allied health professionals. There are a variety of resources available on the NHS England e-learning for health platform, designed to enhance the training and education of the health and social care workforce. This includes a programme on dementia care, and modules in Parkinson’s disease in geriatric medicine.

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps her Department has taken to improve care for people with Parkinson's disease.

Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)

Found: “She gets carers coming to the house for personal care but she has Parkinson's so she needs to be fed

Found: Arts & Heritage Minister Lord Parkinson's speech to the Arts and Humanities Research Council