Dr Deborah Kerr connected with some important UK Headache charity representatives in Hull.
For those of you not able to attend 22nd – 25th January BASH Biennial National Meeting on Headache I’ve been tasked with writing a quick blog regarding the charities represented. I am not going to try and summarise the vast and varied topics that we received talks regarding in this small piece!
How wonderful it was to have a packed room – with, I believe, 350 delegates all eager to improve the lives of people living with headache.
A charity offering easy access to patients, the National Migraine Centre
Representatives from the National Migraine Centre were there to remind everyone of the work they are doing to help improve the lives of people with migraine, Cluster headache and other headache types wherever they reside across the UK. The National Migraine Centre is the only headache-based charity providing remote consultations via video or on the phone. There is a wealth of information on the website in factsheets and their Heads Up podcast, with episodes on a wide range of headache topics, is suitable for patients and healthcare workers. The NMC is a not-for-profit organisation offering both private and voluntary donation appointments. People can refer themselves or their children without the need for a doctor's referral letter. They receive a full consultation and can opt for advice or to receive treatment in the form of anti-CGRP therapy, botox or GON blocks. With 98.6% satisfaction rates they are worth a recommendation. Factsheets and resources - National Migraine Centre
The CSF Leak Association can support people too
Dr Bernadette Hard was in Hull too, representing the CSF leak Association as one of their trustees and as a person who has lived experience of what difficulties a CSF leak can bring. [Editor's note: She has shared her personal experience of having a CSF leak in a previous BASH blog post] The CSF Leak Association is a UK based charity, working to raise awareness of CSF leaks. Their members have been instrumental in developing clear and consistent patient pathways within the NHS. As a relatively newly recognised condition, which is frequently misdiagnosed and often not even known about by healthcare practitioners, their work to get this condition recognised and to support research into CSF leak aetiology and investigation is paramount to getting patients the timely management to help towards resolution that they so desperately need. Homepage | CSF Leak Association
The Migraine Trust -supporting patients, research and BASH
And last, but by no means least, The Migraine Trust. Home - The Migraine Trust This well-known charity has linked with BASH for many years and works hard providing information and support about migraine, campaigning for awareness and change, and funding and promoting research. They actively seek to influence commissioners and politicians. 1 in 7 people suffer from migraine, and the Migraine Trust campaigns for national policy change to take migraine more seriously and to improve the lives of people who have it. They provide support to patients by phone via their Helpline, online chat or email making them accessible to all. You can read more about what they do here.
With waiting lists across the UK in excess of a year, these charities and others such as OUCH and IIH.org.uk are often the only lifeline to information and support for many headache sufferers for long periods of time. They are an absolute necessity.
Dr Deborah Kerr
GPwER in Headache
Hertfordshire
