Medcan Support

Medcan Support

At a glance

Causes

  • Campaigning
  • Children / families
  • Health and well being / research and care
  • Mental health

Other details

Organisation type: 
Not for profit
Geographical remit: 
National - Britain

Objectives

Medcan Support was formed by families with children who are diagnosed with rare and severe forms of treatment resistant epilepsy. These syndromes of epilepsy do not respond to primary and secondary treatments available via the NHS. With no options available our children are left suffering upto hundreds of epileptic seizures per day. 

There is an effective and alternative treatment available in the form of prescription cannabis. Since November 1st 2018 cannabis has been legal to be prescribed in the UK, but sadly due to numerous barriers only three NHS prescriptions exist leaving many thousands of families no choice but to go private for treatment. 

As parents ourselves when we first began using and researching medical cannabis, nothing central was available in the UK - it was difficult to find the right information.

There was a gap to close; a central forum to educate and inform parents, carers and families so they could work with their doctors to make informed decisions on their loved ones' care. That's when we setup Medcan Support as a community interest company.

We want to provide a safe space for families to ask questions about medical cannabis, we can begin to improve confidence and advocate for their children or family members healthcare needs.

Access to medical cannabis via the NHS will take time. Clinicians are not yet trained in the endocannabinoid system, nor cannabis.

The more informed and better educated patients and their families are; the more confident they will feel in speaking about cannabis with their NHS clinicians, and share information, studies and research from MedCan Support.

We collaborate within the UK cannabis industry. Working with other organisations will only allow for better access and the chance for patients to overcome financial barriers. As parents, we know what we are looking for when it comes to our children and their medicine; we want to share this with others.

Medical cannabis within the UK is still very new; reaching out to other countries and having industry experts to speak directly with parents is an invaluable resource.

We also aim to highlight the mental health impact on the wider family - the trauma parents, carers and siblings suffer and have to deal with everyday. With little to no support and with disabled children and their complex needs, families often feel isolated from society, unable to work, socialise, and function as normal families do.  

Activities

We have a private facebook group where families can ask questions and talk about their experiences, since Covid we are wanting to expand this to regional face to face coffee mornings. We hold webinars discussing various topics around epilepsy, cannabis and the clinical research and evidence to support it's use with paediatric clinicians from across the world. We also talk about the wider issues to the mental health impact on the wider family and highlighting the impact of caring for a disabled child. 

With very few clinicians in the UK trained in the endocannabinoid system or aware of cannabis as a medication, parents have to research themselves. Our website has a wealth of information and educational content to allow them to make those informed choices for the child. We also hold webinars with academics, clinicians from around the world (these are available on the website) discussing how cannabis helps reduce seizures, the science, the experiences and benefits seen. We also talk about the Mental Health impact, the lack of support in this area for families and the wider topics of caring for a child with severe disabilities. 

We work closely with the All Party Parliamentry Group to medical cannabis within government highlighting issues to access within the NHS, families experiences, current research. 

With NHS access not available, and access only via the private sector, costs of this life changing treatment can be as much as £2000 per month. With many families going without holidays, respite, care for their own mental health needs and specialist equipment we are raising funds for £500 grants families can apply for. 

The government and NHS have called for more research in this area of medicine, being the only patient organisation in the UK, we have worked with Alta Flora and Drug Science to develop an app and will shortly be launching an observational study on the benefits of prescription cannabis. This follows on from a previous study we launched which demonstrated 92% chance of cannabis being effective and an 85% reduction in seizures. 

There are many other thoughts around supporting families more and projects we'd like to begin, but funding is a priority. 

No current opportunities

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