Author Archive | Michael Nelson

Coronavirus and Cavernoma (Updated)

Updated: 5th June 2020 at 09:56

As the situation with Coronavirus (Covid-19) develops, we all need to be thinking of ways to keep ourselves and our families safe.

For people with Cavernoma, there is no increased risk of catching the virus. However, it is sensible to take reasonable precautions to reduce the chances of catching Coronavirus.

We recommend all follow the current NHS and Government Guidance on sensible precautions to take, such as on hygiene and travel.

Self Isolation Advice

We have been asked whether people with cavernoma should self isolate in view of the Government’s updated guidelines. These stated that people with long term health conditions that would normally require them to have the flu jab, should do so.

Some parents have had letters from school indicating that people with “chronic neurological conditions” should self isolate for 12 weeks. They have asked us if this includes people with cavernoma.

Our Medical Adviser, Professor Rustam Al-Shahi Salman gave us the following direction:

Cavernoma is not specifically mentioned as a condition that requires people to have the flu vaccine (https://www.nhs.uk/conditions/vaccinations/who-should-have-flu-vaccine/#flu-vaccine-for-people-with-medical-conditions).

For most people, cavernoma is not like, “chronic neurological conditions, such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS), a learning disability or cerebral palsy.” But for patients with cavernoma who are impaired in a way similar to patients with the conditions above, it would be sensible to consider the social distancing measures recommended by the Government.

The situation, and decision made by individuals, will be different depending on the particular individual and the symptoms they experience.

Medication Advice

If you are currently taking medication, and become unwell, it is important to keep taking your medication.

  • Regarding anti-epilepsy medication – remember that fever reduces the seizure threshold. It’s important to stay on your anti-seizure medication unless instructed by a doctor to do otherwise.
  • Regarding propranolol – “Beta-blockers are not immunosuppressive agents BUT they can worsen the symptoms of a viral illness such as wheezing.” If you become ill, you should discuss discontinuation with your medical provider.
  • Post-surgical care – those who are recently post-surgical will need to be extra mindful of social distancing and hygiene as you need time to recover. Also, if you’ve been given an incentive spirometer for pulmonary exercise, it’s very important to use it.
  • Blood thinners (antithrombotics). Recent findings have associated Covid-19 with blood-clotting in the blood vessels in the lungs, resulting in consideration being given to the use of blood thinners to treat patients with this virus. People with cavernoma should inform the clinicians treating them for Covid-19 that they have a cavernoma, but there is no evidence to suggest that the use of blood thinners in this context will increase the risk of a bleed in their cavernoma.
  • Note that Angioma Alliance are collecting data from patients with cavernoma who have been tested positive for Covid-19, and if you are in this position it will help our understanding of the interaction of cavernoma with this virus to take part in their survey, for which purpose you can register at http://angioma.org/pages.aspx?content=628&id=477. We encourage you to do so.

Angioma Alliance Webinar

Angioma Alliance, our sister organisation in the USA, held a webinar on 26th March which discusses several issues such as whether there are special precautions to take in the range of situations you might meet. This is available on YouTube at https://www.youtube.com/watch?v=v2rnWgrs13Y&feature=youtu.be

Issues discussed: should I still have surgery, should I still have scans, will a vaccine be safe when it arrives, is it safe to volunteer help, what if I am pregnant.

Research Opportunity

Angioma Alliance are carrying out research into coronavirus and cavernoma.

This is open to people who:

  • have a cavernoma
  • have had a positive test for Covid-19

If this is you, and you would like to register to take part you can complete a form here http://www.angioma.org/covid

Events

As the country moves carefully out of lockdown, we need each other and our community, to help us as we deal with the situation as it changes each week.

Our webinars and virtual chats have proved immensely popular. So much so that we plan to continue holding these in the months ahead.

Webinar Plan for June and July (may be subject to change)

  • 11 June: Cavernoma from a Teenagers Perspective,  Hannah Thompson
  • 16 June:  European Conference on Rare Diseases, Jane Bergholt and David White
  • 25 June: Member Success with a PIP Application Q&A, Kathryn Douthwaite
  • 30 June: They said no, I said Yes! Will Sears
  • 7 July: Guided Meditation with Ginny
  • 9 July: Starting over “A new beginning after being diagnosed with Cavernoma”, Fiona Frise
  • 16 July: Monthly Coffee and Chat, Tracey Hammond
  • 23 July: Cavernoma Genetics, David White and Pat Spallone
  • 30 July: Coffee and a Chat, Paul Davis

For security reasons, we are not putting the direct links on here. To register your interest in the webinar series, please email events@cavernoma.org.uk. We will then send you the details of upcoming webinars along with the links.

These events are currently being run through Zoom. If you’ve never heard of it, or need to know how to install it on your device, check out the helpful information from our IT Support How to Use Zoom

Annual Forum May 2020

The annual forum 2020 was run as a virtual conference this year, and was a huge success. We have three excellent session with international speakers. The videos are available on our YouTube Channel.

Mr Chris Chandler, Consultant Adult and Paediatric Neurosurgeon at King’s College Hospital, London discusses Treatment of Brain and Spine Cavernoma at the Cavernoma Alliance UK Annual Forum

Professor Issam Awad, an internationally recognised leader in neurosurgery, at the University of Chicago talks to Cavernoma Alliance UK about Milestones and The Road Ahead. He has a particular interest in the surgical management of neurovascular conditions affecting the brain and spinal cord.

Dr Anita Rose, Consultant Clinical Neuropsychologist at The Raphael Medical Centre, and a Trustee of Cavernoma Alliance UK, delivers a talk at the 2020 Forum on Managing Neurofatigue.

What will we do instead?

We have some exciting talks and presentations planned for you, and we don’t want you to miss out. Therefore, we are busy arranging for the sessions to be held Virtually. As soon as we have the details in place, we will let you know how to sign up to the virtual sessions.

Like you, we are very disappointed not to be meeting you all in person this year. But we have a responsibility to each and every one of you and we wish to fulfill that with care. The virtual conference will be an exciting venture, and will pave the way for future webinars that will be available to everyone, regardless of whether or not you can travel.

What about next year?

We know how valuable it is to meet in person, and will plan to hold these events, as normal, next year.

We will update this information as the situation progresses.

Videos from UK Forum 2020

The annual forum 2020 was run as a virtual conference this year, and was a huge success. We have three excellent session with international speakers. The videos are available on our YouTube Channel.

Mr Chris Chandler, Consultant Adult and Paediatric Neurosurgeon at King’s College Hospital, London discusses Treatment of Brain and Spine Cavernoma at the Cavernoma Alliance UK Annual Forum

Professor Issam Awad, an internationally recognised leader in neurosurgery, at the University of Chicago talks to Cavernoma Alliance UK about Milestones and The Road Ahead. He has a particular interest in the surgical management of neurovascular conditions affecting the brain and spinal cord.

Dr Anita Rose, Consultant Clinical Neuropsychologist at The Raphael Medical Centre, and a Trustee of Cavernoma Alliance UK, delivers a talk at the 2020 Forum on Managing Neurofatigue.

Rainbows for the NHS

It’s time to get creative!

We’re hosting an ART COMPETITION to raise funds to SUPPORT NHS frontline workers during this pandemic.

How it works;

We want you to get your creative juices flowing to create ONE A4 PIECE with the theme ‘RAINBOWS FOR NHS’.  This can be created using ANY medium you like – watercolours, colouring pencils, line drawing, oil pastels, digital art – whatever you fancy!

The competition is open to anyone and to ALL ages – kids, teenagers, uncles, pets etc.

Your artwork MUST include an NHS RAINBOW – but other than that, we encourage you to be creative and think outside of the box!

The staff at CAUK will select our four favourite entries and then its over to YOU, our lovely members, to vote for your two favourites.

The two winners will have their creations turned into greetings cards, featuring the artist’s name on the back, which we will then be selling online. Winners will also receive a £10 Amazon Gift Voucher.

We want to do our bit to support the hard work of our NHS frontline workers who are working relentlessly to keep the nation healthy, and so 100% of the proceeds will be donated equally between CAUK and NHS frontline.

All you have to do is get creative and send your entries, along with your full name, to events@cavernoma.org.uk BEFORE 5PM on WEDNESDAY 15TH APRIL.

Thank you in advance to everyone for getting involved for this very worthy cause – we appreciate it.

Have fun!

CAUK Conquers Everest

You all do an incredible job raising funds and we are extremely grateful. But so many of the usual methods have been taken away from you, and charities are facing a 40-60% drop in income. What can be done? Let us know of any ideas you have, but we also want to start here and now, with us…

Our wonderful Administrator, Sian Oliphant, has come up with a truly horrible idea! She thinks the staff should do a sponsored team mountain climb. As we can’t leave the house, she tells me we can do this virtually at home, using our stairs. Apparently 58,070 stairs is the equivalent of climbing Everest.

 

We’ve decided to start with the Three Peaks, and build up. Three Peaks in 7 days! If you would like to sponsor us go to https://www.justgiving.com/fundraising/sian-oliphant1

 

Chat and Catch Up Volunteers

The NHS is running an excellent scheme, pairing up volunteers to call or message people who are self isolating at home. We would like to do the same, specifically for people living with Cavernoma, using volunteers who understand the condition.

Would you like to volunteer to help? Or would you like someone to contact you for a catch up each week? Let Tracey know by emailing tracey@cavernoma.org.uk.

Neurological Patient Experience Survey 2018

A new neurological patient experience survey is open, to collect vital information about the experiences of treatment and care, social care and welfare received by people affected by neurological conditions. The survey aims to collect enough data to positively influence future neurology services; including services in respect of cavernoma.

About the survey

The survey is by The Neurological Alliance – an organisation that brings together organisations working to make life better for millions of people in England with a neurological condition. Through the patient experience survey, The Neurological Alliance aims to positively influence the future quality of neuro health and social care services. Too often services fall below the standard expected. This survey aims to help change that.

CAUK fully supports the Neurological Alliance in its ambitions. We welcome the survey as an important tool in gathering shared insights across neurological conditions. The neurology community is strong when it stands together.

What will happen with the results?

The Neurological Alliance will publish the results in a report in summer 2019. This report will set out a comprehensive picture of what is happening in relation to neurological services and make recommendations about how care can be improved. The survey findings will be shared with CAUK members and used by CAUK to inform our future strategic plans.
The Neurological Alliance’s previous two patient experience surveys made a significant impact:

  • Made the case for continued national leadership for neurology. National Neuro Advisory Group set up.
  • Getting the National Neuro Advisory Group to prioritise care planning and communication with patients.
  • Fed into NHS long term plan.
  • Developed a programme of work on mental health and neurology, report published.
  • Influenced the development of NICE guidance on suspected neurological conditions.
  • Raised the profile of neurology through media work.

How do I complete it?

The survey is open from 17th October 2018 to 17th January 2019. It is for anyone with a neurological condition living in England. Carers can help complete the survey as needed. The survey may take around 25 minutes to complete.

Please be aware that you cannot save your answers and come back later. Your responses are completely confidential and anonymous.

Please click below to complete the survey;
http://www.myonlinesurvey.co.uk/NA18PAT/

Our new CEO, Helen Evans on her first day

We are delighted to announce that today is the first day for Helen Evans as our new Chief Executive. Helen brings a wealth of relevant skills and experience that we are confident will take CAUK through to its third phase of development, building on the success of our Big Lottery funded Big Step project. Until recently Helen was Chief Executive of Getting Heard, an Oxfordshire based advocacy charity. Under her leadership the charity was awarded the prestigious Quality Performance Mark, secured multi-year Big Lottery funding and was one of the first providers of Care Act advocacy in the UK.

Before working in the UK charity sector Helen was Head of Safeguarding for a global aid agency, having transitioned from an earlier 10 year career in international Human Resources. Helen is also an alum of the Jo Cox Women in Leadership Programme and former select committee expert witness. Helen will start on the 17th September 2018 and will be home-based, travelling as needed, working from 9.30am to 2.30pm every day except Monday.

Helen has created a special video for her first day, which you can see below…

CaverChat Closing

The CaverChat facility of our website will be closing from today, 17th September 2018, due mainly to lack of use. The majority of our members have chosen to use the facebook groups to communicate and so we highly recommend people visit those groups instead.

ANNOUNCEMENT – Appointment of Helen Evans as our new Chief Executive

Helen Evans Profile picture

Helen Evans Profile picture

We are delighted to announce the appointment of Helen Evans as our new Chief Executive. Helen brings a wealth of relevant skills and experience that we are confident will take CAUK through to its third phase of development, building on the success of our Big Lottery funded Big Step project. Until recently Helen was Chief Executive of Getting Heard, an Oxfordshire based advocacy charity. Under her leadership the charity was awarded the prestigious Quality Performance Mark, secured multi-year Big Lottery funding and was one of the first providers of Care Act advocacy in the UK.

Before working in the UK charity sector Helen was Head of Safeguarding for a global aid agency, having transitioned from an earlier 10 year career in international Human Resources. Helen is also an alum of the Jo Cox Women in Leadership Programme and former select committee expert witness. Helen will start on the 17th September 2018 and will be home-based, travelling as needed, working from 9.30am to 2.30pm every day except Monday.

You can view Helen’s introduction video by clicking here

Helen Evans, new Chief Executive says:

“I am delighted to be joining CAUK and to have the opportunity to take CAUK forward in its third phase of development, building on the success of the Big Lottery funded Big Step project. The work that CAUK leads is critical to meeting the needs of those impacted by cavernoma, and I very much appreciate the opportunity to be a part of this.

On starting at CAUK I anticipate my priorities being twofold: to meet, listen and respond to the needs of the CaverCommunity; and to also lead fundraising efforts ensuring the continuation of activities funded until September 2018 by the Big Lottery. Whilst I don’t have personal experience of cavernoma, I do know what it’s like living in a family impacted by long-term ill-health. I will be coming to this role with the passion of someone who knows first-hand what a difference a charity like CAUK can make, and will be drawing on my experience as a former Chief Executive to ensure CAUK continues building on its successes to date.

May I take this opportunity to acknowledge and thank your Chair of Trustees, Dr David White, who will shortly be taking a well-deserved step back from his role as Chair. I am also thankful to CAUK’s founder, Dr Ian Stuart, without whom this charity would not have been established and who will continue to be our Co-Ordinator. I am very excited to have the opportunity to work for CAUK and look forward to getting to know you all come mid-September”.

Dr David White, Chair of Trustees says:

I am thrilled with the appointment of Helen as the first Chief Executive of Cavernoma Alliance UK. Helen’s experience in the charity sector, both large and small, provides a wonderful background for us as we move into a new phase in our existence.

Dr Ian Stuart, Founder and Co-Ordinator says:

I am very excited at Helen’s appointment, and I looking forward immensely to working with her. She will enable us to move forward with confidence at an exciting time for supporting our greatly increasing membership and the development of new forms of therapy.

Next Steps

The Board of Trustees will be overseeing Helen’s induction and will ensure she has as many opportunities as possible to meet with cavernoma members, within the 18 hours per week her role permits. As discussed at our Annual General Meeting our Big Lottery funding ends this September, meaning one of Helen’s key priorities will be securing alternative funding as well as getting to meet CAUK members. If anyone has any questions or comments about Helen’s appointment please do not hesitate to get in touch.

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