Policy

Current policy issues

Restructuring of the NHS

The Government has now published its Health and Social Care Bill which proposes to restructure the NHS by abolishing Primary Care Trusts and Strategic Health Authorities.  These will be replaced by GP consortiums which will control 80% of the total NHS budget.  A National Commissiong Board will be created work to oversee the service commissioning process.  The Bill envisages close patient involvement with GP consortia through a patient involvement scheme to be known as HealthWatch.

The Government’s proposals on how the NHS will be structured have understandably resulted in much debate and discussion across the political and health forums.  From a migraine perspective what we are interested in is the best treatments being made available to migraine sufferers and for sufferers to be assisted in developing a migraine management programme.

It is thought that only 50% of migraine sufferers get a formal diagnosis for their migraine.  Many people self care but we know from our experience that this can result in people’s migraines not being properly managed and inappropriate medication being taken or people taking too much medication resulting in Medication Overuse Headache.

The Migraine Trust has broadly welcomed the proposed changes as there appears to be a good 'fit' with the needs of migraine sufferers.  Those sufferers who seek a diagnosis for their migraine and consequently are prescribed with treatment will of course be seen by their GP.  With so many people presenting at GP surgeries with headache and migraine we think that the planned reorganisation provides a good opportunity for migraine to be more of a central consideration when planning health services. We believe that GPs are more likely to understand this than PCTs and Strategic Health Authorities who unfortunately are often a block on access to treatment if the migraine treatment is more costly than a prescription for 'standard' treatment options such as triptans.

However, we are concerned that the voice of the patient has become lost.  At the start of the process patients were seen as being one of the three partners in reorganised NHS with GPs and Commissioning bodies being the other two.  This concern has been shared by a number of charities who have come together in May 2011 and issued a joint Listen Up statement.  The statement has been widely reported including on the BBC.

The Migraine Trust is active in representing the needs of migraine sufferers on this issue through our work with umbrella organisations, particularly the Patients Association and the Neurological Alliance and also through our close work with the All Party Parliamentary Group on Primary Headache Disorders.

Access to treatments

There are a wealth of treatments available to migraine sufferers ranging from triptans to over the counter medication to complementary treatments.

At the moment access to Botox which was granted a license for treating chronic migraine is a particular issue.  Despite having been granted a UK license access to Botox on the NHS is extremely difficult.  There are seven Beacon centres across the UK who are trained to administer Botox but getting access to them and having a Primary Care Trust agree to fund the treatment is proving complicated for patients.

Access to treatments however is not just being able to access treatments.  It also covers perhaps too easy access to medication.  The UK has developed an Over The Counter culture whereby people are used to getting many medications from pharmacies without a prescription, including painkillers.  This has led to significant numbers of migraine sufferers developing Medication Overuse Headache whereby the over consumption of painkillers itself leads to headaches over and above the underlying migraine headache.  Access to codeine is readily available in the UK unlike in other countries such as the US.  Codeine addiction has gained significant publicity over recent years and Headache UK in its 2010 Manifesto called for a review of how codeine based products are made available.

Discrimination in the workplace

One of the regular issues we are contacted about concerns migraine sufferers being discriminated against in the workplace.  Being an episodic condition migraine is by definition not a continuous health condition.  Regular absence from work can often occur which too often results in people being called into sick leave interviews and sometimes dismissed.  Migraine as a condition can simply make this worse due to how it manifests itself.  The weekend migraine which results in a sufferer being ill on a Monday morning or stress at work being the trigger for an attack does nothing to help the image of a migraine sufferer in the workplace.  With 80% of migraine sufferers being women it is women who bear the brunt of this lack of understanding.  There are some excellent employers in the UK who understand this and we are regularly invited to give talks to staff and attend Health and Wellbeing Days in workplaces.  But there is still much to be done until all employers and fellow employees fully understand the need to support migraine sufferers in the workplace and not simply shun or discipline them.

Children of any age can develop migraine and it is thought that 2% of 5-year-olds have migraine.  This number significantly rises when children enter puberty as 18% of 13-14 year olds have migraine. 

The Migraine Trust is interested to hear from young people or parents of children or young people about their experiences of managing their migraines in schools.

We would particularly like to hear from you if:

• Your/your child’s school has taken a positive approach to supporting your/your child’s migraines in school.
• Your/your child’s school has good policies in relation to medication and health conditions which have enabled you/your child to manage your/your child’s migraines in school.
• You/your child have experienced difficulties in receiving adequate support and understanding of your/your child’s migraines in schools e.g. unable to store medication in school, lack of support to catch up on missed work, unable to attend trips or activities by the school, ‘informal’ exclusion due to your/your child’s migraines.
• You/your child feel that the school may have discriminated against you/your child due to your/your child’s migraines.

We are interested in hearing your experiences to inform our work in schools and at policy level to raise awareness of the issues young migraine sufferers can face and educate schools and education providers of good practice.  If you would like to contribute your experiences to The Migraine Trust please contact Hannah Verghese by email or call 020 7631 6973.  All correspondence will be treated in confidence.