Prynhawn da a chroeso, good afternoon and welcome.
And thank you to Epilepsy Wales for again inviting me to sponsor and welcome you to this Epilepsy Aware Event, “Supporting People With Epilepsy in Wales”.
This event is your opportunity to have your say, raise issues and share your experiences.
Epilepsy Wales will pass on any questions or issues which are raised but not dealt with today to your relevant Assembly Members.
Some of the facts from my speech at this event last year are worth repeating again.
Epilepsy is the most common serious neurological condition.
There are around 20,000 – 30,000 people with epilepsy in Wales.
It is three times more common than multiple sclerosis and more than three times as common as Parkinson's disease and cerebral palsy.
Approximately 1,500 people develop epilepsy each year in Wales.
1 in 10 will be children under 18, 1 in 5 will have learning difficulties.
Epilepsy misdiagnosis rates are between 20 to 31%.
Around 1,200 people die as a direct result of epilepsy each year in the UK, of which about 600 deaths are attributed to Sudden Unexpected Death in Epilepsy.
- Over 40% of deaths overall - and 59% of child deaths could potentially be avoided through better management of the condition.
The implications of living with epilepsy are far reaching for the individual and for the family - and have costly implications for government and service providers.
At last year’s event we heard from parents and carers of people with GLUT1 deficiency syndrome.
As many of you will be aware GLUT1 is a rare genetic disorder that impairs brain metabolism.
The GLUT1 protein is responsible for the transport of glucose from the blood into the brain.
Glucose is the main source of fuel for the brain. A shortage of glucose leads to impairment of brain function and growth – resulting in seizures. This may also result in people displaying other neurological symptoms, including difficulties with balance and co-ordination.
Unfortunately, it is unlikely that any epilepsy medicines will control the seizure - and although currently there is no cure, there is a special diet that can help, called the ketogenic diet.
This is a low carbohydrate, high fat diet that mimics the state of starvation. The body makes ketones, which can be used by the brain as an alternative fuel to glucose.
Epilepsy Research UK states that “Ketogenic diet therapies have been used in the treatment of drug-resistant childhood epilepsy for almost a century.
Approximately 40% of children show a 50% or more decrease in seizure frequency after three months following the diet”.
As the Epilepsy Action website therefore states, “as soon as GLUT1 is diagnosed, the child should be offered treatment with the ketogenic diet. This is because it will help to improve the child’s development and learning as well as the seizures”.
As we learned at last year’s event, families across Wales were having to travel to Bristol and Alder Hey Children’s Hospitals as there wasn’t a specialist ketogenic team within Wales providing the necessary treatments and levels of care - despite the Keto diet being the recommended first-line treatment by the National Institute for Health and Care Excellence or NICE.
Following last year’s event I raised this with the then First Minister in the Chamber- I am pleased to have heard that the Welsh Government have since been working with the Daisy Garland Trust to establish a dietician post within the Children’s Hospital for Wales and that funding - has been agreed for a ketogenic diet team including full time dietician, nursing and medical support that hopes to be in place by the end of the year.
As Trudy Morgan, who has been campaigning for this with the Glut1 Foundation and who is here today, said, “This is a huge step forward for the patients of Wales wanting to access the Ketogenic diet as a treatment for Glut1 Deficiency Syndrome and Epilepsy as a whole”.
Last year I highlighted the call by several charities for the legalisation of medicinal cannabis on prescription to help treat a range of conditions, including epilepsy.
As I stated, I had led a debate here, as Chair of the National Assembly for Wales Cross Party Group on Neurological Conditions, noting the clinical evidence showing that cannabis-based medicines can alleviate the symptoms of conditions including epilepsy, and calling for the legalisation of cannabis on prescription for medicinal purposes.
The motion was passed on a free vote.
Further to this, the Cross Party Group facilitated a meeting between officials and medical experts last June.
Following the changes set out on 1st November, we have major concerns that the system as it stands is extremely restrictive and that consequently people who could benefit from medicinal cannabis will lose out.
We wrote to the Welsh Health Secretary accordingly and I am advised that discussions with officials are ongoing regarding these restrictions and what we can do differently in Wales.
Fiona, has also asked me to provide an update for you today.
The All Wales Therapeutics and Toxicology Centre, have a process for providing One Wales Interim Commissioning decisions on access to medicines ahead of full Health Technology Assessment by NICE.
They are currently preparing interim guidance on the use of cannabidiol as an adjunctive treatment for seizures associated with Dravet syndrome and Lennox-Gastaut syndrome.
The Interim Pathways Commissioning Group (IPCG), which has representatives from each health board in Wales, will be meeting at the end of June to discuss this use of cannabidiol.
They have recently revised their process to allow input from patient organisations and would welcome comments or input from organisations, particularly in relation to the patient perspective on the use and availability of cannabidiol for these conditions.
They also offer the opportunity for patient interest groups to attend their meeting to provide a patient and carer perspective and to answer any specific questions the group may have.
Fiona has more information on how you could provide this information and also on how to attend that meeting.
Once the IPCG has reached a recommendation this is endorsed by the NHS Wales Chief Executive Board.
All health boards in Wales are then expected to comply with the final decision.
Before I pass onto Fiona, she has asked me to mention the working partnership that Epilepsy Wales has formed with other neurological charities by setting up Neuro cafes.
The cafes are particularly in rural areas where people can get together and receive advice and support in an area that would otherwise not support a single condition group. Their latest one will be in Dolgellau, just outside my Regional Constituency of North Wales.