Author Archive | Michael Nelson

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.

Coronavirus and Cavernoma

Updated: 17 March 2020 at 16:18

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.

Events

All of our events are currently cancelled. 

We will be looking at trying to re-schedule these events at a later date once things settle down, or some events may be replaced by virtual online webinars. We will provide more details when we have them.

Please check back regularly for future updates.

Annual Forum May 2020

Following the Government’s updated advice on 12 March, we are looking at the best ways to ensure everyone is kept safe. For people with a cavernoma, there is no increased risk of catching the virus. However, Government advice is to extra precautions to reduce risk for people with existing health conditions.

As a result of this, we have taken the difficult decision to cancel the 30-31 May 2020 Annual Conference.

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.

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.

CAUK UK Summer Party 2018

You are cordially invited to

THE CAVERNOMA ALLIANCE UK SUMMER PARTY

Saturday 28th July: 6-9 pm

Hurcott Hall, Worcestershire,  DY10 3PH

We know you’ve all been requesting a CAUK informal members get-together/celebration, and we’ve listened! We’d like to invite you to CAUK’s first Summer Party! There will be food, drink, music, and plenty of opportunity to meet with other members and talk.

We have limited placed available, so please get your RSVP in quickly.

We do have a small welfare fund available for those of you who may be struggling with finances, so you can apply for help with your travel should you need it. We will also have discounted hotel rooms locally, should anyone want to stay the night and not travel back late. Do get in touch if you’re in need of a hotel and we’ll let you know the price. We hope you’re as excited as we are! We look forward to hopefully seeing you there!

RSVP: press@cavernoma.org.uk

Please let us know any dietary requirements.

12th Annual CAUK International Forum 2018

The Trustees of Cavernoma Alliance UK (CAUK) are pleased to invite you to attend the 12th Annual International Forum to be held at the Nowgen Centre, Manchester on Saturday 2 June 2018, 9.15am to 5pm. This year we are particularly honoured to be working in partnership with the CAUK CaverFamilies and the Royal Manchester Children’s Hospital.

As always the Forum on Saturday will be free to all registered participants. The day begins at 9.15 with registration followed by a welcome from Ian Stuart, Founder Member and Co-ordinator. This year’s speakers will be Dr Ronan Burke, neuro-psychologist from The National Hospital for Neurology and Neurosurgery and Dr Ed Smith, The R. Michael Scott Chair in Neurosurgery, Co-Director, Cerebrovascular Surgery and Interventions Centre, Director, Paediatric Cerebrovascular Surgery, Department of Neurosurgery/Vascular Biology Program, Children’s Hospital Boston/Harvard Medical School who will speak about advances in cavernoma treatment. Following their talks will be an AGM and recognition of Dr David White’s retirement as chair of the trustees. Lunch will be served after which there will be a panel presentation by amongst others Drs Grace Vassallo, Dipak Ram, (neurologists), Stewart Rust (neuro-psychologist), Emma Dewhurst (Trainee Advanced Paediatric Nurse Practitioner for Neurosciences), Rebecca Keeping (holistic care in the community), Sofia Douzgou (geneticist) and Emma Tait (member).

A new format for 2018 will follow as the speaker’s break into a series of informal pods at specific locations throughout the Nowgen Centre in which members will be able to participate in.Tea and coffee stations will be available at each of these pods.The day will finish at 5pm.

 

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