Speaking at Epilepsy Wales’ annual epilepsy awareness event in the Senedd yesterday, ‘Supporting People With Epilepsy in Wales’, which he again sponsored, North Wales Assembly Member Mark Isherwood provided an update on the actions being taken to better support the 20,000 – 30,000 people living with the neurological condition in Wales.
Mr Isherwood, who is Chair of the National Assembly for Wales Cross Party Group on Neurological Conditions, highlighted that approximately 1,500 people develop epilepsy each year in Wales, with 1 in 10 being children under 18 and 1 in 5 having learning difficulties.
He stressed that 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, and that over 40% of deaths overall, and 59% of child deaths, could potentially be avoided through better management of the condition.
He also emphasised the importance of a Ketogenic diet as a treatment for Glut1 Deficiency Syndrome (a rare genetic disorder that impairs brain metabolism) and Epilepsy as a whole, and welcomed the fact that a ketogenic diet team, including full time dietician, nursing and medical support, look set to be in place in Wales by the end of the year.
He said: “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 (Deficiency) 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”.
At last year’s event Mr Isherwood highlighted the call by several charities for the legalisation of medicinal cannabis on prescription to help treat a range of conditions, including epilepsy, and told attendees of this year’s event what progress has been made in regards to this.
He said:
“As I stated last year, 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 (by the UK Government) 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.
“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 (two early onset epileptic syndromes).
“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 groups may have.
“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.”
