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Epilepsy Awareness Campaign and Lack of Ketogenic Services in Wales

//Epilepsy Awareness Campaign and Lack of Ketogenic Services in Wales

Epilepsy Awareness Campaign and Lack of Ketogenic Services in Wales

Written by Matthew’s Friends Founder and CEO, Emma Williams MBE

On 3rd July, Epilepsy Wales held an awareness event at the Senedd in Cardiff and Matthew’s Friends were a contributor to this event.  You can read about it by clicking HERE

As a charity, we have spent literally YEARS pushing for ketogenic dietary therapy services to be set up in Wales, I have had meeting after meeting, we have offered funding, training and support for new services to be developed (and I know that we are not the only ones that have offered funding). I also know that there are several very frustrated health care professionals that would very much like their hospital to have their own ketogenic service and have submitted business plans to get them.  All with the same answer at the outcome… NO.

Reasons have been varied but the most popular offered to date:

  1. No funding available to set up new service or WON’T guarantee funding the service after charity funding has ended.
  2. No demand for it.
  3. Service for Adults – Not recommended in Nice Guidelines so therefore does not have to be provided.

Countering the arguments:

  1. Having a ketogenic dietary service could end up saving the NHS money in the long term for a relatively small amount of funding each year. If children are getting better, not taking as much medication, not going into hospital as much etc etc…. all this saves the NHS money, but nobody is ‘joining the dots’.  Everyone is looking at their own small budget for THIS year and not looking at the bigger picture at how much will be saved in the long term.  Also, why are they funding patients to go to England for treatment?  Put this money towards a Welsh Service and that will also free up more service in England, which is also still needed.
  2. There IS a demand for it pure and simple. This is just not a true.  This statement suggests that NO ONE in Wales has drug resistant complex epilepsy and that is just complete rubbish.  This statement also suggests that no one in Wales as Glut1 Deficiency (G1D) or Pyruvate Dehydrogenase Deficiency (PDD), for which both conditions need ketogenic dietary therapies as their ‘standard of care’ treatment and the fact of the matter is, there ARE patients in Wales with both of these particular diseases.   So quite clearly there IS a demand, in fact there is an ever growing NEED for ketogenic dietary therapy services in all areas of the UK but especially in Wales where there is absolutely nothing.  The only reason that our very frustrated medical professionals can’t promote the diet or recommend it to the patients is because…. THERE IS NO SERVICE… so we are in a vicious circle.
  3. Adults – No, it is not currently recommended in the NICE guidelines for use with adults and hopefully this will be changed in the near future, it is certainly something I am keen to see changed and Matthew’s Friends are working towards this. However, G1D patients and PDD patients grow up and they still need the diet, where are they supposed to go?  Adults can benefit from Ketogenic Dietary Therapies and there are some adult services around the UK having great results, so why should adults in Wales be denied a chance of a better life?  We know within 3 months whether the diet will be beneficial or not.  How much money could be saved if Adults with complex epilepsy, that have failed multiple drugs, can trial a diet that could possibly change their lives and give them back a good quality of life.  Surely there can’t be a price put on that but sadly it seems there is.  Compared to surgery and VNS, the diet is actually the cheapest option but severely underused.

As we continue to fight the apparent never ending bureaucracy and politics involved in all this, the actual people in NEED of Ketogenic Dietary Therapies are being overlooked, ignored and left suffering.  Parents and caregivers are having to watch their loved ones suffer frequent seizures, suffer cognitive delays and regression, and in some cases, lose their lives.

Emily Wheatley and Ella.

 

 

 

Emily Wheatley, mum to Ella, a 5 year old little girl with G1D, supported the awareness day at the Senedd and has started a petition https://chn.ge/2KFO1Hn calling for ketogenic services in Wales.  Matthew’s Friends are more than happy to support her efforts and ask you to sign this petition.  The sooner we can get dedicated ketogenic services in Wales for the Welsh people, the sooner loved ones may have a chance at a better life.

I know what it is like to be denied this potential life changing treatment for your child and it is because of this that I started Matthew’s Friends back in 2004.  I could have saved my own son over 24,720 seizures if I had got the diet when I first asked for it, instead he suffered devastating brain damage, so by the time we got him to the diet, the damage had been done, but at least it still reduced his seizures by 90% and he was able to come off all medication and has a lovely quality of life to this day, the diet gave me what was left of my son back.   His story proves that it is never too late to try a ketogenic therapy and there is always hope for a better quality of life.  The only thing that is getting in the way of this hope in Wales, is politics and bureaucracy and THAT is just criminal in my personal opinion.

Please support Emily and Epilepsy Wales in raising awareness of complex and drug resistant epilepsy and the need for Ketogenic Dietary Therapy Services for Wales.

 

 

2018-07-12T10:47:11+00:00