Asked by: Rachael Maskell (Labour (Co-op) - York Central)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether she has taken steps to invest in research for early detection of neurological conditions.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
The Government is committed to supporting research into the early detection of neurological conditions and funds such research through the National Institute for Health and Care Research (NIHR) and UK Research and Innovation. The NIHR welcomes funding applications for research into any aspect of human health, including research for early detection of neurological conditions. It is not usual practice to ring-fence funds for particular topics or conditions. Applications are subject to peer review and judged in open competition, with awards being made based on the importance of the topic to patients and health and care services, value for money and scientific quality.
The NIHR delivers the Clinical Research Network Neurological Disorders Speciality Group, which supports clinical research in the National Health Service in epilepsy, multiple sclerosis, headache, neuro-muscular disease, neurological infections, and the normal development of the nervous system. By promoting high quality clinical research, the group aims to increase the understanding of the causes of these conditions, and improve the prevention, detection, care and treatment for people suffering from them. The NIHR has also supported studies relating to the early detection of neurological conditions, such as Project Rhapsody which investigated the clinical feasibility of using artificial intelligence-based deep audio and language processing techniques to diagnose neurological and psychiatric diseases.
Asked by: Mike Amesbury (Labour - Weaver Vale)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what assessment has he made of the potential merits of utilising medicinal cannabis to treat children with intractable epilepsy.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
The licensed cannabis-based medicine Epidyolex is prescribed and routinely funded by the National Health Service for the treatment of people aged two years old and over with Dravet syndrome, Lennox-Gastaut syndrome and Tuberous Sclerosis Complex. This follows approval by the Medicines and Healthcare products Regulatory Agency (MHRA) and assessment by the National Institute for Health and Care Excellence (NICE).
Clinical guidelines from NICE state that there is insufficient evidence of safety and efficacy to support a population-wide practice recommendation for the use of unlicensed cannabis-based products, for the treatment of adults and children with severe treatment-resistant epilepsy. NICE also made recommendations for further research to inform future commissioning decisions.
The Government encourages manufacturers to invest in research and clinical trials, and offers scientific and research advice from the MHRA and the National Institute for Health and Care Research.
Asked by: Mohammad Yasin (Labour - Bedford)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to help ensure adequate levels of supply of medication prescribed for (a) epilepsy, (b) hormone replacement therapy and (c) ADHD.
Answered by Will Quince
The Department has well-established procedures to deal with medicine shortages and works closely with the Medicines and Healthcare products Regulatory Agency, the pharmaceutical industry, NHS England and others operating in the supply chain to help prevent shortages and to ensure that the risks to patients are minimised when shortages do arise.
We are aware of a current supply issue with generic lamotrigine 5mg dispersible tablets for epilepsy. We have issued comprehensive management guidance to the National Health Service highlighting the availability of alternative products.
There have been issues with the supply of a limited number of hormone replacement therapy (HRT) products, primarily due to very sharp increases in demand, but the supply position for many of those products has improved considerably over the last year. Only one of the 23 Serious Shortage Protocols issued since April 2022 remains in place. We continue to engage with suppliers individually to address these issues and improve resilience in the short, medium and long term. We are also holding quarterly roundtables with manufacturers, wholesalers and community pharmacists to monitor progress and agree what more needs to be done to ensure supply is sufficient to meet demand. The eighth HRT supply roundtable is expected to be held in January 2024.
We are aware of disruptions to the global supply of medicines used for the management of attention deficit hyperactivity disorder (ADHD). Some issues are now resolving. However, we know that there are currently disruptions to the supply of some other medicines, primarily driven by issues which have resulted in capacity constraints at key manufacturing sites. We are working intensively with the respective manufacturers to resolve the issues as soon as possible and to ensure patients have continuous access to ADHD medicines in the United Kingdom, in the short and long term.
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 he will make an assessment of the potential merits of including policies on epilepsy in the the Major Conditions Strategy.
Answered by Will Quince
The Major Conditions Strategy will cover cancers, cardiovascular disease, chronic respiratory disease, dementia, mental ill health and musculoskeletal conditions as these are the six groups of conditions that contribute the most to mortality and morbidity. We expect the approach to tackling these conditions as set out in the report, Major conditions Strategy: a case for change and our strategic framework may have a positive impact on patients with other conditions, including epilepsy.
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 his Department is taking to help support people living with epilepsy.
Answered by Will Quince
The majority of health services for people with epilepsy are commissioned locally by integrated care boards (ICBs). ICBs are best placed to make decisions regarding the provision of health services to their local population, including for the treatment of epilepsy, subject to local prioritisation and funding.
At a national level, there are several initiatives supporting service improvement for those with epilepsy, including NHS England’s Neuroscience Service Transformation Programme and RightCare Epilepsy Toolkit.
Asked by: Dan Carden (Labour - Liverpool, Walton)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department is planning to take to help improve epilepsy care.
Answered by Will Quince
The majority of health services for people with epilepsy are commissioned locally by integrated care boards (ICBs). ICBs are best placed to make decisions regarding the provision of health services to their local population, including for the treatment of epilepsy, subject to local prioritisation and funding.
At a national level, there are a number of initiatives supporting service improvement for those with epilepsy, including NHS England’s Neuroscience Service Transformation Programme and RightCare Epilepsy Toolkit.
Asked by: Stephen Farry (Alliance - North Down)
Question to the Department for Work and Pensions:
To ask the Secretary of State for Work and Pensions, what guidance his Department produces for Personal Independent Payment assessors on how to process cases where an applicant has epilepsy.
Answered by Tom Pursglove - Minister of State (Minister for Legal Migration and Delivery)
All claimants, including those with epilepsy, are assessed in accordance with the Personal Independence Payment (PIP) Assessment Guide available on GOV.UK. All PIP Health Professionals (HPs) complete training on neurological conditions, including epilepsy.
HPs can access a wide range of clinical resources, including e-learning modules and case studies, to research any conditions presented. Both PIP providers also have a Condition Insight Report on epilepsy for use by their HPs. In addition, HPs are also expected to keep their knowledge up to date through Continuous Professional Development.
Asked by: Christopher Chope (Conservative - Christchurch)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if he will meet members of the Medcan Family Foundation to discuss the availability of advanced unlicensed medicinal cannabis for those people who had been diagnosed with childhood epilepsy.
Answered by Will Quince
Health Ministers have met with families and patients and have discussed the challenges around the use of unlicensed cannabis-based medicines at great length in Parliament., Ministers are focused on galvanising research to determine if these products are safe and effective and might be funded within the National Health Service.
The National Institute for Health and Care Research and NHS England will be supporting two world-first randomised control trials on cannabinoids in the treatment of epilepsy. When further details on the trials is available, we will ensure the Medcan Family Foundation are informed.
Asked by: Charlotte Nichols (Labour - Warrington North)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether the Medicines and Healthcare Products Regulatory Agency is taking steps to investigate the potential effect of valproate on men and their fertility.
Answered by Maria Caulfield - Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)
Valproate is a medicine authorised for the treatment of epilepsy and bipolar disorder. The product information for all medicines is approved by the Medicines and Healthcare products Regulatory Agency (MHRA). The product information for valproate containing medicines has listed male infertility as a possible side effect since 2011.
In 2021, the MHRA reviewed the totality of data on the risk of male infertility associated with valproate including evidence for reversibility of effects. Although the data are limited, the valproate product information was updated in 2021 to advise that male infertility is usually reversible after treatment discontinuation and may be reversible after dose reduction. However, in some cases, the reversibility of male infertility was unknown.
The underlying biological mechanism is currently uncertain, but animal data on valproate show toxicity to testicular tissue structure and function. MHRA keeps all data under review and is investigating the clinical relevance of these data with the marketing authorisation holders.
Asked by: Lord Warner (Crossbench - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what assessment they have made of any adverse effects on children as a result of not establishing a consistent child identifier, especially those children with (1) complex needs and disabilities, (2) long-term conditions such as asthma, autism and epilepsy and (3) looked after children and those at risk; and whether they will publish such an assessment.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
No specific assessment has been made. Every child is assigned an National Health Service number at birth or the first time they have contact with NHS services. The NHS number acts as is a unique patient identifier and is used to share information within electronic healthcare records. This contributes to improved health outcomes for children, including looked after children and those with complex needs, disabilities and long-term conditions, by ensuring that health professionals identify patients correctly and have access to information to inform the delivery of appropriate care.
Through the Health and Care Act 2022, the Government has committed to report on Government’s policy on information sharing in relation to the safeguarding of children, including looked after children and those at risk, by summer 2023. The report will include an explanation of whether it is the Government’s policy that a consistent child identifier should be used across agencies.