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.

 

Landscape of the Mind Art Sale

Cavernoma Alliance UK’s “Landscape of the Mind” art sale, bringing together the work of international artists of all disciplines, has been running since 12 March 2018 to coincide with Brain Awareness Week 2018. It looks to raise awareness of cavernoma, as well as funds to support members of the charity. All art work is being sold anonymously, and at a fixed price of £75 – making art affordable for everyone!

To view pieces on sale, please visit; https://art.cavernoma.org.uk/

Introducing our new Northern Community Worker, Ailsa Crowe

We’re happy to announce that Ailsa Crowe will be joining the CAUK team as our new Northern Community Worker.

In her own words, a brief biography


Hi all! I’m Ailsa
I’m 27 years old from Glasgow and your new Northern Community Worker! Two years ago in October I was diagnosed with a right thalamic Cavernoma after suffering a bleed whilst living and working abroad. I moved back to the U.K. to get the help and support I needed and have spent the time adjusting to my new normal. I have found CAUK to be an incredible source of information and support since day one and am delighted to have the chance to contribute to something that means so much to so many of us!

A little bit about me… I have a Masters degree in Logistics, I have lived and worked in 6 different countries and speak fluent Spanish! I love to travel and to read, and sport (especially tennis) has been a huge part of my life. I’m hoping to get back on the court one day soon! I’m an outgoing, sociable person and I’m looking forward to meeting and/or speaking with all of you ‘Northerners’ soon!

I’m sure you’ll all join us in welcome Ailsa to the team – if you’d like to contact Ailsa, you can contact her via her email address ailsa@cavernoma.org.uk

CAUK Forum 2017 : Art Auction

At the CAUK Forum 2017, we will be holding an Art Auction with paintings by Carolyn Nicholls.

Without further ado, the paintings and auction in her own words;

I can’t run. I don’t fancy jumping out of a plane and cycling makes me dizzy. But I can paint. Painting was my lifeline after my 3rd bleed and consequent brain surgery. My cavernoma was on my speech and language centre (left occipital- just above your ear!) and after my surgery I could hardly read, so I put my nascent novel on hold and sketched, drew and painted to help my somewhat battered brain to heal.

Like many of you, I got so much wonderful help, information and support from the Cavernoma Alliance UK that I wanted to give something back. So I painted four works that could be turned into art cards to raise funds. You will be able to buy them for £2.50 each at local Cavernoma Alliance events and at the York forum in June. All the profit goes to further the work. I have also donated the original paintings to be auctioned to raise more funds and you can put in a silent bid online below. You can own one of these painting to hang on your very own wall or you can form a small group to bid and donate the painting to brighten a venue dear to your heart, perhaps a hospital or doctors surgery.

Please bid generously, bidding is open to friends, family and anyone who is good for the money! Bidding will be via email up until the LIVE auction at the CAUK 2017 forum and closed on that day with the winner being notified if not in the room. If you are not at the forum the painting will be well wrapped and can be sent to you by a courier.

For more information, to view the lovely pictures or to place a bid, see here

Katy, Surrey

The Adventures of Clive the Cavernoma

I’m going to take you on an adventure. A brain adventure. As that is what our little cavernomas have decided to take us on. My adventure started when I moved to the Southern Hemisphere, to experience working as a doctor in a slightly less stressful health system, with sunshine on tap and in the land of the all day brunch that is Australia. What I didn’t have in mind was getting to know the Australian Health Care System rather too well.

I am proof that doctors make the worse patients. After ignoring intermittent right sided pain and weakness for the best part of 2 months, my body decided to give me a wake-up call. Suddenly, after finishing a ward round, I had a wave of vertigo, which was swiftly followed by loss of feeling of my right arm. I really was in the right place at the right time when it happened. I was suddenly the “stroke call”, which is the alarm that goes out on doctors pagers, telling them that there’s a patient that needs urgent review with a potential stroke. This alarm always causes my heart to race, but this time my heart was racing even faster as I was the patient.

Pre-Op Clive

The scans showed a bleed in my left parietal lobe from a cavernoma in the sensory cortex.
I named him Clive.

The next 9 months of the adventure brought me to have close encounters with hospital food and 4am blood pressure checks. You see Clive was not a happy Cavernoma and he enjoyed throwing the odd tantrum. I had five bleeds in total during this period and the deposits left over from the breakdown of the bleeds caused partial seizure epilepsy, which refused to be kept in check with medication. During this time I learnt to appreciate the invention of the pill box, which kept me organised as I titrated up and down multiple drugs regularly.

With the growing side effects of the medication that weren’t controlling the seizures, episodes of drug toxicity and a constant “cotton wool brain” from the “oozing” of Clive, a decision was finally made. I had awake brain surgery to remove Clive the Cavernoma and the deposits from the bleeds.

Firstly AWAKE brain surgery was the funniest experience I’ve ever had. I said some embarrassing things in that operation (which I had asked to be recorded), and it still feels very surreal. On a serious note though, the thought of it is definitely scarier than the experience. I was woken up, slightly disorientated, but very comfortable and with a slight feeling of pressure around the head. Easy.

Learning to walk again

Clive, Post Op

Clive, Post Op

Post-op was the hard part. I woke up unable to feel or move my entire right leg. I still remember the feeling when I stood for the first time, in the huge forearm support frame, looking at my right leg with distrust. It was as if my leg had turned into a feather and I was asking it to support my entire body weight. A goal chart was essential at this point to get myself through the next few weeks in hospital. After practicing all weekend with my physiotherapist brother I was able to surprise the medical team and physiotherapists when I finally walked down the corridor unassisted and subsequently out of the front door with my discharge papers. Freedom!

The final adventure Clive was going to take me on was that of rehabilitation. A time of naps, exhaustion after walking 100 metres, the return of the “cotton wool brain” and the need for intense concentration in order to put a sentence together. Any increase in pressure led to a “headquake” feeling, as if the bones were like tectonic plates grating together, making sneezing an undesirable activity. The frustrations of not being able to do what I used to do such as running and reading were difficult. Neuro recovery seems to take you forward for a few days and then backwards in huge steps the next. However with time, patience, perseverance and kindness, I have passed milestones in these last 6 months of rehabilitation and every day feeling a little step closer to my old (now Clive less) self.

This has been the easy part, telling you my story. What I really want to talk about are the lessons that I’ve learnt, in the hope that any one of them may be useful for both Cavernoma patients and relatives.

  • Lesson 1: ‘Clive the Cavernoma’. Naming it sounds like an odd thing to do but it worked wonders as a coping mechanism. It’s an odd feeling knowing that there’s something there in your brain that you have no control over, but giving that thing a name, something that you can refer to or express emotions at, made acceptance that much easier.

  • Lesson 2: My stroke…The hidden injury. Post Op I remember getting onto a crowded bus and thinking how on earth do I get a seat? To strangers I looked pretty normal. When really even balancing for a few seconds was exhausting. Unlike broken bones, brain injury is hidden from sight, secretly causing mischief to the way the body functions. Reminding yourself and everyone else around you is a key step to recovery and how you get that seat on a bus.

  • Lesson 3: That epic goal chart. Post injury or post-op…goals are the way to keep yourself looking forward. From showering independently to running that 10km 9 months later, each goal is no less greater than the other.

  • Lesson 4: Feel the sand beneath your toes and swim the ocean blue. After ending up with right leg sensory loss, I found that contact with sand and water was a great way to send feedback to the brain. Walking on sand is perfect for testing your balance too whilst water helps to awaken those lazy muscles and rejuvenate those lost neuro-connections. Shallow end first!

  • Lesson 5: Rehabilitate…’Pilates is gaining the mastery of your mind over the complete control of your body’ Joseph Pilates. With weekly Pilates sessions, I re-gained coordination, proprioception and strength that I had lost from having brain surgery.

  • Lesson 6: Sleepyhead. Brains need naps post injury. Others areas of the brain are now having to take over the job of the area that’s injured, an exhausting business. Fatigue has been my greatest nemesis and I find that when I overdo it, the neurological deficits get worse. Listening to your body is essential for recovery and the all-important little nana naps throughout the day will help the brain re-charge.

  • Lesson 7: Love your brain. Care for it, feed it, listen to it; don’t let it trick you into thinking you can undertake a multiple of tasks…oh whilst learning how to walk again. Time, rest, gentle exercise and a good diet is what the brain needs to recover and keep it healthy. The best advice I was given was this…”Don’t forget, the brain takes longer than a broken leg to heal”.

  • Lesson 8: I have a hole in my brain…The greatness of neuroplasticity. Some other wonderful neurons in my brain are now doing some weight lifting and have taken on jobs that the injured part can no longer do. 6 months post-op, I can walk, run (sort of) and almost balance on one leg. Neuro rehab is not an easy path and as a patient you take your friends and family along this rocky path with you. With all injuries and illnesses it’s mentally and emotionally exhausting for everyone involved, but the most important thing I’ve learned is to share the experience. Which helps, when you can’t quite function on those brain exhaustion days, to know that your people are right here with you. Don’t be hard on yourself, push yourself, but not too much and as always #loveyourbrain.

Katy on a boat, 2017

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