May. 29 2024
Source Page: Letters and medicine recalls sent to healthcare professionals in April 2024Found: feasible, other antiseizure medicines should be considered, availability and adherence to relevant epilepsy
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: Emma Hardy (Labour - Kingston upon Hull West and Hessle)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether she is taking steps to help ensure access to ketogenic diet treatment in (a) Hull West and Hessle constituency and (b) nationally.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
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 the national level, there are a number of initiatives supporting service improvement for those with epilepsy, including NHS England’s Neuroscience Service Transformation Programme and the RightCare Epilepsy Toolkit.
The National Institute for Care Excellence (NICE) guideline on epilepsies in children, young people, and adults [NG217], published in April 2022, covers diagnosing and managing epilepsy in primary and secondary care, and referral to tertiary services. Recommendation 8.1 states that a ketogenic diet should be considered under the guidance of a tertiary epilepsy specialist for certain childhood-onset epilepsy syndromes, and for drug resistant epilepsy when other treatments have failed or are not appropriate. More information on this is available at the following link:
https://www.nice.org.uk/guidance/ng217/chapter/8-Non-pharmacological-treatments#ketogenic-diet
We expect National Health Service commissioners to take NICE guidelines into full account in designing services that meet the needs of their local populations. It is, however, important to note that NICE guidelines are not mandatory and do not override a clinician’s responsibility to make decisions appropriate to individual patients, in consultation with them and their families.
Asked by: Catherine West (Labour - Hornsey and Wood Green)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether she has had recent discussions with Novartis on the adequacy of supply of the epilepsy medication Tegretol.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
The Department has been working intensively to address issues with the supply of some epilepsy medications, and as a result we have helped to resolve issues with Tegretol 200 milligram and 400 milligram prolonged release tablets, and Tegretol 100 milligram immediate release tablets. We are aware of a shortage of Tegretol 100 milligram/5 millilitre liquid, but have been advised that resupplies are expected this month. We are continuing to work closely with manufacturers, including Novartis, to help ensure the continued supply of these medicines for patients in the United Kingdom, for example by asking suppliers to expedite deliveries.
Whilst we can’t always prevent supply issues, we have a range of well-established tools and processes to mitigate risks to patients. These include close and regular engagement with suppliers, use of alternative strengths or forms of a medicine to allow patients to remain on the same product, expediting regulatory procedures, sourcing unlicensed imports from abroad, adding products to the restricted exports and hoarding list, use of Serious Shortage Protocols, and issuing National Health Service communications to provide management advice and information on the issue to healthcare professionals, so they can advise and support their patients.
Found: Alistair Haw (Scottish Huntington’s Association ), Anissa Tonberg, (Scottish Government ), Anna Te lfer (Epilepsy
Found: 1 Cross-Party Group on Epilepsy 29 November 2023 12:30 -13:30 Minute Present MSPs Alasdair
Asked by: Catherine West (Labour - Hornsey and Wood Green)
Question to the Ministry of Justice:
To ask the Secretary of State for Justice, how many people with epilepsy have died in prison (a) from all causes and (b) as a direct result of their epilepsy in the last ten years.
Answered by Edward Argar - Minister of State (Ministry of Justice)
The information requested could only be obtained at disproportionate cost.
Every death in custody is a tragedy and we continue to do all we can to improve the safety of prisoners. All deaths in prison custody are subject to a coroner’s inquest.
The HMPPS National Health and Safety Arrangements for First and Emergency Aid (publishing.service.gov.uk) require each prison to complete a first aid needs assessment, taking account of local risk and demand. All sites must have in place suitable numbers of adequately trained staff, equipment, and facilities to meet the need for first aid provision. First Aid training provided to prison staff – such as the course provided by St Johns Ambulance, which includes a wide range of topics, including how to deal with epileptic seizures – meets the standard required to comply with the Health and Safety (First Aid) Regulations.
Mentions:
1: Judith Cummins (Lab - Bradford South) One parent said:“our son has severe complex needs including epilepsy, which can cause him to stop breathing - Speech Link