Changes on the Board of Trustees

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Following the CSF Leak Association’s 2019/2020 AGM tonight, we can confirm that the new charity trustees are as follows:

  • Clare Joy (Chair)
  • Tamsin Trevarthen (Secretary)
  • Cerian Baldwin (Treasurer)
  • Deborah Ogg

Find out more here: www.csfleak.info/trustees-and-governance

The Board would like to take this opportunity to extend its thanks and gratitude to David Baldwin, Chair of the organisation between 2016 and 2019 and Secretary 2019-2020, who did not seek re-election at the AGM.

David played a pivotal role in the establishment of the charity and we could not have made the progress that we have made without his handwork and dedication: we wish him well for the future as he adapts to his new role of Dad to his new son, Calum.

Annual General Meeting 2020

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The charity’s Annual General Meeting (AGM) will take place at 7pm on 19 November 2020.

All of our members are eligible to attend. Members may join the meeting as a tele-/videoconference using Skype (slots permitting).

For more information, to book a slot  or to download the agenda/background papers/proxy vote, please click here:

www.csfleak.info/agm2020

 

Covid-19 Patient Impact Survey 2020

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We need your help

Covid-19 pandemic is an unprecedented event and has had a significant impact on delivery of healthcare services in the UK.

We want to understand the impact the pandemic has had on the care and treatment of patients with diagnosed or suspected CSF Leaks in the UK.

What delays or cancellations have patients experienced to outpatient appointments, scans and procedures?

Have services been delivered in different ways such as telephone / video consultations and how effective do patients feel these have been?

Additionally, what has been the impact of any disruption in care on patients overall health?

CSF Leak Association Patient Survey September 2020 ImageTo achieve this aim, we have created an anonymous survey. By completing this survey, you will help us understand what the impact, if any, has been. How this may differ across the UK, including identifying where services are working well and areas where improvements are needed.

You are welcome to fill the survey in on behalf of a patient, such as a child. Please ensure you only fill in and submit the survey once.

Participate in the survey here: www.csfleak.info/covid19survey

We are very grateful for your contribution to this survey. The more information we can collect the better picture we have of what is happening.

Updated Medical Accommodations Card for CSF Leaks

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CSF-Leak-Association-Medical-Accommodations-Card-V2-Home-Print-VersionMany CSF leak sufferers will have experienced the need to sit or lie down because of their symptoms, while being in a place where sitting or lying down was not socially acceptable, allowed or provided for. Sometimes people may initially object to you lying down somewhere because your disability is invisible.

The CSF Leak Association has updated its popular Medical Accommodations Card, which can often help in such situations. The card is free to download for personal use. It can be folded in half and kept in your purse or wallet. CSF Leak Association members also receive professionally-printed version in their welcome/renewal packs.

The card explains what a CSF leak is, what symptoms you may be experiencing and your need to sit or lie down. It can be shown to any one who may not understand your need to sit or lie down and encourage them to make allowances and provide assistance.

You can download a copy to print off at home here:

CSF Leak Medical Accommodations Card

 

CSF Leak Volunteers’ Week 2020

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It’s Volunteers’ Week 2020 in the UK.

We’re celebrating all of the work that our wonderful volunteers have done.

We’re also on the lookout for more volunteers.

Check out our dedicated web pages here: www.csfleak.info/volunteersweek2020

#VolunteersWeek #VolunteersWeekScot #CSFleak

Coronavirus (COVID-19) & Cerebrospinal Fluid (CSF) Leaks

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Covid-19 Coronavirus CSF Leak Association Banner

Note: This page will be kept under review and amended if/when government or expert guidance is updated. Updates will be printed in blue text. Last updated: 24 March 2020.

Many of our members and community members have raised concerns about the ongoing coronavirus pandemic (COVID-19) and whether or not people with CSF leaks, both cranial and spinal, and those with cerebral shunts, are at an increased risk of catching the virus or having more severe illness if they get the virus.

We have consulted with our Medical Advisory Committee in light of revised government guidance that now advises those at ‘higher risk’ to practice social distancing, and their feedback is included in this statement. The definition of higher risk currently includes being older than 70, having some underlying health conditions and being pregnant.

As of 23 March 2020, only essential travel outwith the home for food, health reasons or essential work is now advised in the UK; the vast majority of people have been told to remain in their houses and avoid contact with anyone from outwith their immediate home group. 

COVID-19 is a novel virus and as such there isn’t a large body of evidence to draw from and this outbreak is an evolving situation. There is currently no clear evidence to suggest that having a CSF leak or a shunt, on their own, puts a person at higher risk. This virus predominantly affects the lungs and, if severe, it is known to cause cardiac issues.

We would, however, urge each of you to carefully consider your overall health status, including your age, smoking status and other separate health conditions you may have (including high blood pressure, heart disease, lung disease, cancer or diabetes) when considering what steps you plan to take to manage your risk of contracting the virus.

Please also be aware that there are a number of health conditions known to co-occur in some people who have or have had a CSF leak (e.g. connective tissue disorders, postural tachycardia syndrome (PoTS), mast cell activation syndrome (MCAS) and intracranial idiopathic hypertension (IIH)) and if you are affected by any of these conditions, we would urge you to seek advice from condition-specific organisations who have issued their own statement in relation to COVID-19 or your medical team; you must consider your own health status in the round.

If you have specific concerns about your individual health then it would be best to speak with your doctor and follow the government or health service-issued guidance relevant to where you are.

Regardless of how stringently each of us chooses to follow the social distancing guidance, we can all do our part by practising good hygiene practices, isolating as and when necessary, keeping in virtual contact with each other and sharing only trustworthy information and advice about COVID-19.

Please also consider your mental health and emotional well-being at this time and don’t forget to take a break from the news from time to time. It is important for us all to keep abreast of current NHS and government guidance, but it is equally important for us to maintain perspective.

The mental health charity, Mind, has some useful information that might help: www.mind.org.uk/information-support/coronavirus-and-your-wellbeing

Finally, everyone involved with the CSF Leak Association wishes you all the best in these coming months. Disruption to NHS services will no doubt affect many of us as the UK’s four health services mount a response to the outbreak; if we successfully ‘flatten the curve’ this outbreak will still be with us for some time.

Although nobody can predict with any certainty how mild or otherwise their illness will be if they get COVID-19, we know that many people with CSF leaks report that even common colds and flu (particularly with associated coughing) can make their symptoms harder to cope with. If you rely on pain or other regular medication, please make sure that you contact your GP surgery to make sure you have what you need.

Please also don’t be shy about asking your friends or family for help during any period of self-isolation and if you’re in the unfortunate position of being in isolation without your usual support network, there are local support groups springing up all over to help out. We would, however, urge you to exercise caution when dealing with any external organisations that are not formally registered as charities or healthcare providers, as they may not be subject to the same level of scrutiny or regulation.

Here are few links and resources that you may find useful:

If you believe that you may be experiencing symptoms of Covid-19/Coronavirus, you must follow the latest NHS/government guidelines and, amongst other things, self-isolate. If you are not located in the United Kingdom, advice for your country may vary slightly.

CSF Leaks at the London Marathon 2020

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CSF Leaks at the London Marathon 2020We are absolutely thrilled to announce that the CSF Leak Association has been allocated a place and will be running the world famous London Marathon in 2020.

This is a wonderful opportunity at a global event to bring attention to cerebrospinal fluid leaks, focus the spotlight on our cause and raise much-needed funds.

Representing us on this challenge will be seasoned runner, Claire Secker, whose husband, Russell, experienced a CSF leak in 2019. Both he and Claire have got stuck in with the charity and are determined to use their experiences and skills to help others.

Claire Secker is running the London Marathon 2020 for the CSF Leak Association

Claire Secker is running the London Marathon 2020 for the CSF Leak Association

Here’s Russell talking a little about his journey:

“Prior to May 2019, I was suffering from a severe CSF Leak. I developed frontotemporal dementia, and was descending into madness. My wife Claire cared for me as I became less and less able to function, advocated for me to the medical profession, and found a brilliant neurosurgeon in Los Angeles who operated on my spine and fixed my leak. Dr Schievink And his team saved my life.

When we had our discharge meeting with Dr Schievink a week after my surgery in May 2019, he told us that most CSF Leak “survivors” don’t stay involved with the leaker community once their illness has been fixed. We both told him that going forward we wanted to help to support sufferers and help to educate the medical profession in the UK.”

This is a wonderful opportunity for the CSF leak community and we’re determined to capitalise on it to the max. Please help us to raise awareness of CSF leaks and spread the word by supporting Claire today.

We hope that you will tell all of your friends and family and share the fundraising page far and wide. Whilst daily living is a marathon in itself for a great many CSF leak sufferers, we can be there in spirit with Claire, willing her along!

Send Claire and Russell a message of support, spread the word and help raise vital funds for CSF leaks here: https://uk.virginmoneygiving.com/ClaireSecker1

London Marathon Route Map

#CSFleaks #SpinalCSFleak #IntracranialHypotension #LondonMarathon #LondonMarathon2020

Calling all Junior Doctors: Intracranial Hypotension Symposium 2020 Attendance Bursary

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The CSF Leak Association is delighted to be able to offer a bursary to support a UK-based junior doctor to travel to, and attend, the 3rd annual Intracranial Hypotension Symposium on 8th February 2020 in Los Angeles.

3rd-Annual-Spontaneous-Intracranial-Hypotension-Symposium-2020The symposium is organised by the US-based Spinal CSF Leak Foundation in partnership with Cedars-Sinai Medical Centre Department of Neurosurgery, and attracts experts and interested professionals from around the world.

The 2018 symposium saw speakers attend from Europe, Australia, Canada and the United States. You can read about last year’s event here. Presentations from past events are also available online: 2018 symposium and 2017 symposium.

Full information about the bursary and the online application form can be found here: www.csfleak.info/bursaries/intracranial-hypotension-symposium-2020

Download the PDF information pack here: www.csfleak.info/IHS2020-Infopack

Hospital Saturday Fund Grant

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hospital-saturday-fund-grant-csf-leak-associationWe are delighted to announce that we have been awarded a grant by Hospital Saturday Fund to help us develop a new website and resource hub.

The new site, which will be developed with industry partners over the coming months, will feature up-to-date tech and make access to quality information and support for CSF leak patients quicker and easier.

Special thanks of course go to the Hospital Saturday Fund, who have shown a real interest in helping us help those with cerebrospinal fluid leaks, and also to our trustees who have worked so hard on securing the funding.

#csfleak #spinalCSFleak #intracranialHypotension

Annual General Meeting 2019 (Agenda & Papers)

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The CSF Leak Association annual general meeting (AGM) will take place at 7pm (BST) on 6 August 2019 in Strathpeffer. The meeting will be hosted on Skype.

All current members of the charity may attend in person, dial in or vote by proxy. For those living locally, spaces will be available at the registered office, and for those further afield, limited first-come-first-served places will be available on the Skype call.

The business of the meeting will include elections to the Board of Trustees and consideration of the annual report, annual accounts and proposed changes to the constitution.

Links to the agenda, papers pack (which includes the annual report and accounts, proposed changes to the constitution, trustee biographies etc.) and a proxy voting form have been distributed to members.

If you have not received or have mislaid the email or would prefer to receive a copy by post, please contact us and we’ll be happy to reissue the papers to you.

To book a place in person or on the Skype call, please email contact us no latter that 1 August 2019. Places will be issued on a first-come-first-served basis.

If you would like to vote on an agenda item by proxy, please download and complete a proxy voting form and return it to us no less than 48 hours prior to the AGM (7pm on Sunday 4 August) to allow time for it to be processed.

If you have any questions or queries about the AGM or the work of the charity more generally, please feel to contact us and we’ll be happy to help.