Annual General Meeting 2019

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This year’s CSF Leak Association AGM will be held on 6 August 2019 at 7pm (BST). The agenda will be published later this month and papers circulated to members.

The meeting will be hosted on Skype and all current members are welcome to join us. Places are limited and will be allocated on a first-come-first-served basis.

Full details to follow…

CSF Leak Association Christmas eCards 2018

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We’ve teamed up with DontSendMeACard.com so that you can send festive e-cards this December and donate the equivalent cost of Christmas cards to charity.

It’s much easier and quicker than sending conventional cards, it helps to raise awareness of CSF leaks and it supports the charity too…and if you’re a UK taxpayer, you can even use Gift Aid!

csf leak association christmas card 2018

Click here to send a card today: www.dontsendmeacard.com/ecard/kHKC

You can choose a generic card with a traditional festive greeting or select one of four special Scandinavian-themed CSF Leak Association Christmas cards, based on original photographs taken by charity member and CSF leaker, Kariina Pirhonen.

#CSFleak #SpinalCSFleak #DontSendMeAcard #Christmas

Changes on the Board of Trustees

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The CSF Leak Association’s 2018 AGM was held at the beginning of August. Amongst the busy schedule of business were elections for office bearers.

The Board of Trustees said goodbye (and a huge thank you) to Polly Walker, Deborah Lunnon and Deborah Ogg, all of whom stepped down for personal reasons but will continue assisting us in our work in a voluntary capacity. At the same time, we welcomed aboard Clare Sargeant, who joins us a Secretary and a Trustee.

You can read all about the governance of the charity, and the composition of both the Board of Trustees and Medical Advisory Committee under our governance section: www.csfleak.info/trustees-and-governance

Annual General Meeting 2018

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AGM Banner

The charity’s Annual General Meeting (AGM) will take place at our registered office at 7pm on 1 August 2018.

All of our members are eligible to attend in person. Members may also join the meeting as a teleconference using Skype (slots permitting – see below). Voting can be carried out in person, via Skype or by proxy.

Full details about the AGM, the agenda and background papers (including the annual report), can be downloaded by by logging into the members’ dashboard and clicking on the AGM button mid-way down the page.

Alternatively, members can request copies from secretary@csfleak.info (you must include your membership number with your request).

AGM ATTENDANCE

If you wish to attend the AGM in person, you may attend at the registered office (please contact us for details). If you wish to attend via Skype teleconference, then you must email secretary@csfleak.info no later than 7pm on 25 July 2018 in order to secure a place on the Skype call. Nine Skype slots are reserved for the existing trustees and slots for members are therefore limited to 15 callers (service status permitting); these will be allocated on a first-come-first-served basis. Details of how to dial into the meeting will be circulated to those who have booked a slot.

You must have a Skype account and up-to-date Skype software in order to attend online; meeting these requirements will be the responsibility of the member and the AGM will not wait for members who have not joined by the given time. The Skype call will start no later than 6.55pm on the 1 August 2018 to ensure all members are dialled in. Any member not online by 7pm will be deemed not to have attended. The Association can take no responsibility for Members’ own technical problems.

AGM PROXY VOTING

For members who are unable to attend in person or online, proxy voting is also available. This must be arranged in advance in accordance with the guidelines outlined in our Decision-Making Protocol, which is available to download from the members’ library. Members wishing to use a proxy vote must complete the official proxy vote form in full and return it to us within the prescribed timescales. The proxy form itself can be downloaded by clicking here, while copies of both the protocol and proxy form can be downloaded from the members’ library or are available on request.

Leak Week 2018 Survey

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Have your say-01
Leak Week UK took place in the first week of March 2018. We spent the week raising awareness of CSF leaks, sharing stories presented by sufferers themselves and publishing new material.

We’re an organisation run by CSF leak sufferers for CSF leak sufferers, and we’re always keen to improve on what we do and to get your feedback. We’ve prepared this short survey and we’d love it if you would let us know how you felt it went, what you liked and what you feel we could do better next time:

Please click on this link to take part in the survey: www.smartsurvey.co.uk/s/4PQ6H

Thank you!

Post-Epidural Blood Patch Precautions Guidance

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During Leak Week UK 2018, we published brand new guidance on sensible precautions to take after an epidural blood patch.

It covers a range of key considerations for things to avoid or consider if you’ve recently had an epidural blood patch to resolve a spinal CSF leak.

Whilst this guidance has been produced in consultation with UK neurologists, as always, we would strongly encourage you to seek and follow advice from your own doctor.

You can download your copy of the leaflet by clicking here.

Post-Epidural Blood Patch Precautions Guidance

Medical Advisory Committee Update: March 2018

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The 20th January saw the inaugural CSF Leak Association Medical Advisory Committee meeting at the National Hospital for Neurology and Neurosurgery in London.

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
CSF Leak Association Medical Advisory Committee Members

MAC Members at the inaugural meeting in London (Jan 2018)

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 an historic meeting for CSF leaks in the UK.

New Spinal CSF Leak Imaging Factsheet

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Imaging Quick Reference Factsheet FB Advert 1

Quick Reference Guide to Spinal CSF Leak Imaging Techniques

We we delighted to have been able to release our brand new factsheet on imaging techniques to coincide with both Day Three of Leak Week UK and global Rare Disease Day 2018.

The guidance provides a brief overview to most of the common imaging techniques that diagnosed or suspected spinal CSF leak sufferers will encounter on their diagnostic and treatment journeys.

It was prepared with significant professional input and should answer many of the common questions that patients have about the different scans that they’re put forward for.

You can download your own copy of the publication by clicking here.

 

Blue Kelpies for Leak Week UK

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Our special thanks go to Scottish Canals for supporting this year’s Leak Week UK by lighting up the wonderful Kelpies for CSF leak awareness.

Thank also to everyone one braved the plummeting temperatures to attend and pose for this fabulous photograph [credit: Ray Michael].

You can read more about Leak Week UK 2018 here: www.csfleak.info/leakweek2018