We publish a newsletter which is sent to all members, doctors surgeries, libraries, national and local politicians. The newsletter includes details of our events together with news about advances in the treatment of epilepsy and changes in benefits available to members. To see the latest edition view here
In case of potential delays at UK borders after Brexit The Epilepsy Society stated in a letter they had sent tn August 2018, the Government asked pharmaceutical companies to ensure they have a minimum six week stockpile of prescription-only and pharmacy-only medicino the Baily Moirror that " here has been much anxiety around the article. We thought it would be helpful to share the full quote which we sent “It is vitally important that people with epilepsy have access to a continuous supply of their medication at the right dose and strength, in order to keep their seizures under control. For most people with epilepsy, their medication regime will have been finely tuned over many years to maximise their seizure control and minimise side effects.
“A single breakthrough seizure can have a huge impact on a person’s life. One seizure and they suddenly find they are no longer allowed to drive; their job or education may be affected; and it can impact on their personal life. But seizures can be fatal, too. One thousand people in the UK die from epilepsy related causes every year – seizures are not benign events.
“We are already seeing huge anxiety in people with epilepsy who are worrying about whether they will be able to get a continuous supply of their medication, either for themselves or for their loved ones. And anxiety itself can trigger seizures.
“We have been working closely with the Department of Health and Social Services to ensure that every measure is in place to safeguard these medications. And we have Health Secretary Matt Hancock’s assurance that they understand just how vital anti-epileptic medications are for those with epilepsy. The National Audit Office report confirms the huge amount of work that is being done by the Government and the measures that have been put in place to safeguard medicines. But until the HGVs are rolling and the medication is on our shelves, I don’t think any of us will allow ourselves the luxury of breathing easily.”
In all matters related to this as in other clinical matters we rely on the information from Epilepsy Research UKwho have issued the following statement
The ERUK view of the current debate around cannabis-based products as a treatment for epilepsy can be found below.
To summarise the statement, whilst there is evidence that medical-grade preparations of an active ingredient of cannabis, cannabidiol, can be beneficial in some types of epilepsy, cannabis oil itself cannot be considered a safe or effective treatment. This is due to the variety of compounds found in over-the-counter cannabis oils, some of which may have harmful effects. People with epilepsy and their families should consult with their epilepsy specialist doctor for advice as to treatment options.
With very many thanks to Professor Hannah Cock
Why the interest in cannabis?
The idea that cannabis might be helpful for some people with epilepsy has been around for thousands of years. However, it is only in the last few decades that we have started to understand why this might be. The brain makes chemicals (endocannabinoids) which are very similar in structure to some components of cannabis. These are involved in the regulation of how “excitable” the brain is, and so can also influence the liability to seizures. Cannabis contains hundreds of different chemicals, the two most important of which are Tetrahydrocannabidiol (THC) and Cannabidiol (CBD). Both THC and CBD seem to be effective against seizures . THC is the part that makes people feel “high”, but it can also cause negative effects such as anxiety and paranoia . THC has also been shown in some models of epilepsy to promote seizures. There is also a small risk of the brain getting used to THC, needing more over time (tolerance) and potentially leading to addiction. Taken regularly there is also significant evidence that THC, particularly in the developing brain (up to young adulthood), can sometimes cause permanent damage to IQ, mental health and brain structure. For these reasons doctors and scientists have focussed on CBD, which doesn’t seem to carry these risks.
The European Medical agency has now approved the medical preparation Epidiolex for use for the treatment of Dravet Symptom and Lennox Gastaut SyndromeThis has been welcomed by the Epilepsy Society and a statement from them can be Found here. Other preparation of Cannabis Oil and treatments of other conditions are unaffected.
The Kent & Medway Care Record
Recent changes in the law means that all NHS organisations must now legally share information about your care with other professionals to enable this joined up care to happen.
The complex picture in Kent & Medway means there are 4 x hospital trusts, 3 x provider of core community services, 2 x providers of community based mental health services Also there are 249 GP practicesaround 466 social care providers. 394 dentists
157 opticians more than 335 pharmacies in primary care 2 x Out-of-hours primary care services and 303 privately run residential and nursing care homes In addition a number of people travel from outside Kent and Medway to use services in Kent and Medway hospitals.
So what’s the vision?
Vision for the KMCR “Regardless of who employs them, health and care professionals are able to quickly and easily view their patient’s digital records (or relevant components of them) from wherever they are, and without the need to navigate multiple systems, regardless of the local health or care provider who holds them.”
How will this happen?
The way in which this is going to be done is via the Kent & Medway Care Record which is a computer system that NHS organisations can view and read on a range of devices to help them plan and deliver the health care that you need. Only registered health and social care professionals can read your records and they can only see the elements that are relevant to their role and the care that they are providing you.
For example, a Care worker visiting someone at home might be able to see that they have recently been discharged from A&E without having full access to that person’s entire medical history. But they would be able to see who to contact to find out more if needed.
What are the planned benefits?
- Improved outcomes because care professionals have better data about their condition, needs and wishes.
- Reduced delays in receiving the right care in the right place at the right time, and where applicable quicker discharge because care professionals do not have to wait for information to be received from another care setting
- Improved transitions of care that should avoid having to give their details and history each time.
- Assurance that all care professionals involved are aware of their needs and care plans.
- Access to own care record allowing better self-management supported by information and advice about how they can help themselves.
- Increased control over their personal health information through a consent model that enables them to determine which organisations and care professionals should have access to their records.
- Personal health analytics enabling them to understand their usage of the care system.
- Personalisation of communication preferences e.g. email, letter or SMS.
For health and social care professionals and providers:
- Better integrated care by sharing data for handovers and MDTs; and enabling new models for delivering integrated care.
- Improved safeguarding: ensuring that children and vulnerable adults that are at risk are immediately known as being so and reducing the level of risk
- Improved quality of clinical and professional decision making: taking into account all relevant information, especially in complex cases.
- Reduced care costs through: avoiding repeated tests and unnecessary treatment; more effective use of out-of-hospital care packages, reducing pressure on emergency care; shorter hospital stays through multi-agency discharge planning; more effective medication reconciliation.
- Quicker and more efficient communication between care organisations
- More efficient workflows: enabling visibility of workflows between care professionals.
- Assurance that care is provided consistently, safely and in accordance with the needs and wishes of the individual.
What is the Governance for the Care Record?
The basis for sharing information for direct care is General Data Protection Regulation Article 9(2)(h) and Article 9(3). The Kent and Medway Care Record will enable health and social care organisations to meet the statutory ‘duty to share’ set out in the Health and Social Care Act 2012 /2015. Care providers do not need the consent of the patient to access relevant information about the patient or to share it with those who provide (or support the provision of) direct care to the patient if all of the following are met.
Next steps (anything else to add?)
Your feedback on the proposed KMCR will be taken back to the reference Group.
The development of the KMCR requirements will be led by a Citizen User Group and the Clinical Reference Group.
For more information about the Kent & Medway Care Record and other plans to improve health and social care services please visit: