A group of doctors from around the UK, along with members of our Board of Trustees and our Patient Representative, met to discuss cerebrospinal fluid (CSF) leaks and to begin to work together to raise awareness and secure progress within the UK health systems.
The meeting was a culmination of almost two years of work by the CSF Leak Association and was the first time that medical professionals met around a table with the sole intention of talking about health care as it relates to this debilitating and under-diagnosed condition.
In attendance were:
- Dr Manjit Matharu, Consultant Neurologist, NHNN, UCLH NFT
- Mr James Walken, Consultant Neurosurgeon, Aberdeen Royal Infirmary, NHS Grampian
- Dr Anthony Ordman, Consultant in Pain Medicine, Royal Free Hospital, Royal Free London NFT
- Dr Changez Jadun, Consultant Neuroradiologist, Royal Stoke University Hospital, UHNM NT
- Dr Simon Ellis, Consultant Neurologist, Royal Stoke University Hospital, UHNM NT
- Polly Walker, Trustee, CSF Leak Association
- Deborah Lunnon, Trustee, CSF Leak Association
- Clare Joy, Trustee CSF Leak, Association
- Cerian Baldwin, Trustee, CSF Leak Association
- Sarah Mead, Patient Representative
With apologies received from:
- David Baldwin, Chair of the CSF Leak Association
- Dr David Butteriss, Consultant Neuroradiologist, The Newcastle-upon-Tyne Hospitals NFT, Royal Victoria Infirmary
- Dr Brendan Davies, Consultant Neurologist, Royal Stoke University Hospital, UHNM NT
An overview of the CSF Leak Association’s work to date and plans for the future were shared, followed by an acceptance of the MAC Terms of Reference. Dr Manjit Matharu was elected as chair and Clare Joy was elected as Secretary.
Sarah Mead was also in attendance in her capacity as current patient representative. The remit of the patient representative is to represent the CSF Leak Association’s membership, and patients more generally, within the organisation and, in particular, on the Medical Advisory Committee.
Throughout the afternoon, encouraging and in-depth discussions took place focusing on:
- a review of current literature and website information;
- gap analysis of current content including specific requests for guidance resulting from patient survey;
- the NHS Information Standard and the Association’s road to accreditation;
- a proposed conference/symposium and patient day in the UK;
- securing the addition of CSF leak information on the NHS Choices and NHS Inform websites;
- guidance on creation of an approved NHS pathway for CSF leaks; and
- an agreement of annual objectives.
Whilst realistic about the scale of the task ahead, all parties were deeply encouraged, enthusiastic and positive about the future, secure in the knowledge that a firm working relationship has now been established between the Association and the MAC. This was a historic meeting for CSF leaks in the UK