Asked by: Peter Dowd (Labour - Bootle)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if his Department will take steps with local Integrated Care Boards to help ensure that rare disease services are delivered according to the priorities set out in the Rare Disease Framework.
Answered by Andrew Gwynne - Parliamentary Under-Secretary (Department of Health and Social Care)
The UK Rare Diseases Framework sets a high-level strategy to focus action across the healthcare system to address the four priorities of: helping patients get a final diagnosis faster; increasing awareness of rare diseases among healthcare professionals; better coordination of care; and improving access to specialist care, treatments, and drugs. Integrated care boards (ICBs) are responsible for commissioning some specialised healthcare services, which help treat patients with rare diseases, whereas others are commissioned centrally by NHS England. For those specialised services commissioned by ICBs, the ICBs must commission the services in line with service specifications and standards published by NHS England. NHS England remains accountable for the effective arrangement of those specialised services.
Asked by: Peter Dowd (Labour - Bootle)
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 progress of work under the UK Rare Diseases Framework; and what steps his Department plans to take to ensure that rare disease continues to be a health priority.
Answered by Andrew Gwynne - Parliamentary Under-Secretary (Department of Health and Social Care)
A rare disease is defined as a disease or condition which affects fewer than one in 2,000 people within the general population. While they are individually rare, they are collectively common, and one in 17 people will be affected by a rare disease at some point in their lives.
Improving the lives of people living with rare conditions continues to be a health priority. The UK Rare Diseases Framework sets out four priorities, collaboratively developed with the rare disease community, which are: helping patients get a final diagnosis faster; increasing awareness of rare diseases among healthcare professionals; better coordination of care; and improving access to specialist care, treatments, and drugs. We remain committed to delivering under the framework and will publish an annual England Action Plan in 2025, which will report on progress.
The annual England Action Plan sets out specific, measurable actions for the next year under the framework's four priority areas. To ensure delivery and accountability, each action lists an owner, the desired outcomes, and how we will measure and report on progress. We have also committed to commissioning a portfolio level evaluation of England’s Rare Diseases Action Plans to measure progress for people living with rare conditions. This evaluation is now underway, and we look forward to updating on next steps in 2025.
Asked by: Peter Dowd (Labour - Bootle)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what resources are available to support care coordination across (a) geographical areas and (b) disciplines for rare and ultra-rare conditions.
Answered by Andrew Gwynne - Parliamentary Under-Secretary (Department of Health and Social Care)
We remain committed to the UK Rare Diseases Framework, which highlights better coordination of care as a priority to improve the lives of people with rare diseases.
Under England’s Rare Diseases Action Plans, we have committed to a range of measures to improve coordination of care. Last year, the National Institute for Health and Care Excellence published an updated quality standard on transition from paediatric to adult care, to support better co-ordination of care. NHS England continues to review and approve applications for new rare disease collaborative networks (RDCNs) across a range of specialties and disease groups. The RDCNs are an important part of NHS England’s provision to improve care and support patients with rare diseases. They are made up of groups of providers who have an interest in developing an understanding of a particular rare disease, and who are committed to working together to progress research, increase knowledge, and improve patient experience.
NHS England committed to include the definition of coordination of care in all new and revised services specifications for patients with rare diseases, and to ensure the priorities of the UK Rare Diseases Framework are embedded across highly specialised services. All highly specialised centres are required to work collaboratively with other providers in the service and to have shared care arrangements in place with local hospitals, as required.
NHS England is implementing networked models of care for patients with rare diseases, ensuring that specialist expertise is always available whilst allowing patients to be treated and cared for as close to home as possible. In addition, NHS England has committed to measuring the geographic spread of patients accessing highly specialised services to ensure that all patients have access to the services, and are not disadvantaged. A toolkit for virtual consultations was developed in 2023, and made available to all trust chief executives and highly specialised services clinical leads, to help people with complex, multi-system rare diseases access multiple specialists without needing to travel.
Asked by: Peter Dowd (Labour - Bootle)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether his Department plans to take steps to prioritise improvement of care for (a) rare blood disorders and (b) other rare and ultra-rare conditions.
Answered by Andrew Gwynne - Parliamentary Under-Secretary (Department of Health and Social Care)
Improving the lives of people living with rare and ultra-rare conditions, such as rare blood disorders, continues to be a health priority. We remain committed to the UK Rare Diseases Framework, which highlights four priorities to improve the lives of people with rare diseases, including better coordination of care, and improved access to specialist care, treatment, and drugs.
We’re working hard to provide the best possible care to those living with rare blood disorders, such as sickle cell disease and thalassaemia. NHS England’s priorities for the improvement of care for rare blood disorders includes an established programme of work to improve clinical pathways and care for people with sickle cell disease, which has recently been expanded to include thalassaemia. We are also boosting Ro subtype blood donation numbers and delivering world-leading treatments, such as the new blood matching genetic test which will reduce the risk of side effects and offer more personalised care.
NHS England commissions services for patients with Thrombotic Thrombocytopenia Purpura across 11 hospitals. This is an aggressive blood clotting disease which is difficult to diagnose and has a high mortality rate if left untreated. In the acute phase of the disease patients need rapid access to specialist care. This is a lifelong condition, and patients receive ongoing monitoring by the multidisciplinary team, shared care with local hospitals, and access to specialist drugs.
The National Health Service is reviewing and updating the service specification for haemophilia care through the Blood Disorders Clinical Reference Group, alongside a new quality dashboard that will enable commissioners to monitor the quality of the services in their areas, benchmarked against other services across the country.
Asked by: Peter Dowd (Labour - Bootle)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the potential merits of the National Paroxysmal Nocturnal Haemoglobinuria Service for care coordination for people with rare diseases; and what steps his Department is taking to help such patients to access multi-disciplinary care.
Answered by Andrew Gwynne - Parliamentary Under-Secretary (Department of Health and Social Care)
The UK Rare Diseases Framework sets out four priorities to improve the lives of people living with rare diseases, such as Paroxysmal Nocturnal Haemoglobinuria (PNH). This includes the priority of improving co-ordination of care.
NHS England commissions services for patients with PNH from two centres, the Leeds Teaching Hospitals NHS Trust and the King's College Hospital NHS Foundation Trust. These two services work collaboratively to provide specialist care and care coordination to patients with PNH in England. This involves specialist diagnosis, multidisciplinary team care, shared care with local hospitals, and access to specialist drugs. The centres also provide outreach clinics. The service is recognised as an exemplar and has reduced mortality and improved outcomes for patients.
Asked by: Peter Dowd (Labour - Bootle)
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 - Shadow Secretary of State for Work and Pensions
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.
Asked by: Peter Dowd (Labour - Bootle)
Question to the HM Treasury:
To ask the Chancellor of the Exchequer, with reference to the Spring Budget 2024, whether he has made an estimate of the potential return on investment of (a) violence reduction units, (b) hot spot policing, (c) increasing the capacity of children's homes and (d) the building of 15 new special free schools.
Answered by Laura Trott - Shadow Secretary of State for Education
These measures are part of the Public Sector Productivity Review, which will deliver up to £1.8 billion worth of benefits by 2029.
We have committed £75 million to expand the Violence Reduction Unit model across England and Wales, supporting a prevention-first approach to serious violence. Violence Reduction Units enable local public services such as health boards, schools and police leaders to coordinate their joint strategy to tackle serious violence among young people, preventing violent crime and reducing burdens on healthcare, schools and criminal justice.
As part of the Anti-Social Behaviour Action Plan, we committed £66.3 million to scale up hotspot enforcement. From April 2024, hotspot response will be rolled out across every police force area in England and Wales, which will see thousands of additional high visibility patrols in the places most affected by Serious Violence and Anti-Social Behaviour.
An independent evaluation found that in 2022/23, VRUs and hotspot policing prevented 3,220 hospital admissions from violent injury – a statistically significant drop. Please find a link to the evaluation here: https://www.gov.uk/government/publications/violence-reduction-units-year-ending-march-2023-evaluation-report/violence-reduction-units-2022-to-2023#:~:text=In%202022%2C%20a%20further%202,data%20sharing%20and%20analysis.
On increasing the capacity of children’s homes, the Government announced £165 million of funding over the next 4 years to reduce the reliance of local authorities on costly emergency provision.
Finally, the building of 15 new special free schools through £105 million of investment over the next 4 years will deliver over 2,000 additional special places for children with special education needs and disabilities.
Asked by: Peter Dowd (Labour - Bootle)
Question to the Department for Work and Pensions:
To ask the Secretary of State for Work and Pensions, if he will take steps to review planned changes to the Work Capability Assessment to reflect the impact on people with (a) Parkinson's and (b) other long-term conditions.
Answered by Mims Davies - Shadow Minister for Women and Equalities
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: Peter Dowd (Labour - Bootle)
Question to the Department for Work and Pensions:
To ask the Secretary of State for Work and Pensions, if he will meet with Parkinson’s UK and the hon. Member for Bootle to discuss the experience of people with Parkinson’s in the social security system.
Answered by Mims Davies - Shadow Minister for Women and Equalities
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: Peter Dowd (Labour - Bootle)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, when she plans to publish details on how the NHS long-term workforce plan will be implemented.
Answered by Andrew Stephenson
We have established a Long Term Workforce Plan Governance Board which will ensure the delivery and review the progress of the Long Term Workforce Plan’s implementation. The modelling NHS England has used in the plan is founded on data, evidence, and analysis and provides a set of broad ranges to measure the potential impact of actions over its 15 year timeframe. We have committed to refreshing the modelling that underpins the plan every two years, or in line with fiscal events.