We need to make it easier for families to access life-changing medical cannabis prescriptions

Alberto Costa MP

@AlbertoCostaMP

Two of my young constituents, suffer from severe and rare forms of drug resistant epilepsy. Their families are having to pay up to £2,000 a month to pay for private prescriptions of medicinal cannabis which has been available on the NHS for three years. Their families are having to go to unbelievable lengths to fundraise money just to enable them to have a better quality of life and not to suffer every day with debilitating seizures.

The cost of accessing the medicine privately has led to a great deal of emotional stress and financial difficulty for families like my constituents, who are already having to cope with the immense pressures of caring for a very sick child.

As co-chair of the APPG on Medical Cannabis Under Prescription, I have continued to raise awareness and lobby the government on this issue. Today, I will be holding a Westminster Hall Debate to again highlight the difficulties my constituents and others are facing in this situation and to encourage the government to reconsider solutions in the short and long term.

I would also urge the government to consider providing an emergency fund to cover the costs of the prescriptions

Both myself and other colleagues across the House have lobbied tirelessly for years to widen access. I have also worked with the excellent campaign group End Our Pain, who have been campaigning on this issue for several years as well as supporting the families affected. I was very pleased when the government legalised medical cannabis, so that it could be prescribed on the NHS in specialist cases. Although the harsh reality is this has not been applied in practice and since the law change three years ago just three prescriptions have been issued on the NHS. 

One of the reasons for the blockage, is that at the same time as the law change, a number of bodies issued guidance on how and when medical cannabis should be prescribed.

These bodies included British Paediatric Neurology Association, the General Medical Council, National Institute of Clinical Excellence and the Royal College of Physicians. The high level of caution expressed in the guidance is likely to have played a part in the preventing of the prescribing of these products.

Therefore, I would urge the government to ensure paediatric neurologists are provided with further education on the benefits of whole plant extract medicinal cannabis for children suffering with intractable epilepsy. To gain more evidence on the benefits of whole plant medical cannabis for children with severe epilepsy, I would also encourage the government to commission an observational trial to collect this evidence, whilst allowing the children a way to access this medicine in a cost-free way.

I would also urge the government to consider, at least in the short term, providing an emergency fund to cover the costs of the prescriptions, while long term solutions to the blockage on the NHS are resolved.

There are a small number of children across the country who would benefit from this and it would also elevate the financial burden for their families like my constituents who currently rely on fundraising efforts in order to cover the enormous costs.

I hope that the government will consider the above points and those made in my debate today. I will continue to champion this issue as co-chair of the APPG to ensure the children suffering with these severe forms of epilepsy have a better quality of life by accessing medical cannabis on the NHS.

Alberto Costa is the Conservative MP for South Leicestershire.

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