U.K. Neurological Alliances Unite

‘Together for the 1 in 6’

Each of the four countries in the U.K. has its own Neurological Alliance, and a co-production (co-pro) group was established involving neurological patients from each country to get a range of feedback from different perspectives on neurology care across the United Kingdom. Fortunately, I was in communication with Rachel from Genetic Alliance U.K., who passed my name on to be one of the 12 chosen neurology patients to take part in the co-pro group.

The Co-production Group

big ben london
Big Ben

The co-pro group was put together off the back of the ‘My Neuro Survey,’ which was a U.K.-wide survey sent out by the Neurological Alliances in each country. The survey asked many questions about neurological patients’ care. Over 8000 patients (or their carers/guardians) from England, Wales, Scotland, and Northern Ireland filled out the survey. The Neurological Alliance then looked at the three most common areas that patients felt were underperforming or need improvement.

The three most highlighted issues taken from the ‘My Neuro Survey’ were:

  • Mental Health Support
  • Access to specialist services
  • Information about the neurological condition the patient was diagnosed with

Through the co-pro group, the name ‘together for the one in six’ was chosen for the campaign, which derives from the fact that 1 in 6 people in the U.K. suffers from a neurological condition, and all four nations are coming together to push for much-needed improvements in neurological care.

Weekly Zoom Meeting

Every week on a Thursday, the co-pro group meets via Zoom and discusses the forthcomings of the ‘My Neuro Survey’, and bounces ideas and opinions off each other. For me, the best thing about this is that everyone is on the same page. We are all in it together and the issues discussed are reflective of what everyone has experienced in the group. There’s the saying ‘power in numbers, and this is the reality of the co-pro group, we are all individuals, but together we are a much louder voice. There are over 600 different neurological conditions, but we all have a common goal, to improve the standard of care.

A neurological patient has a first-hand experience of the care, the symptoms, and what does and doesn’t help; and of course, they’re the one living with it every day. Physicians and politicians, the decision-makers, don’t have that experience unless, of course, they suffer from a neurological condition themselves. So, the aim of the game is to tell them what it’s like from a first-hand perspective and to get the policymakers to improve patient pathways and improve the standard of care.

u.k. neurological alliances unite
London Eye and the River Thames

My Perspective

Personally, I’ve had many experiences of neurological care having had a brain tumour at 8 years old, developed hydrocephalus (build-up of fluid on the brain) at aged 11, multiple bouts of meningitis, at least 20 different neurosurgical procedures, a cerebrospinal fluid leak, and now I’m battling superficial siderosis. I’ve been treated in both Wales and England, via the NHS and privately, as a child and as an adult. I have had quite a range of experiences, and it really is a postcode lottery in terms of the care that is received.

The ‘My Neuro Survey’ Results

My mum and I set off at 10 am in the morning to get the coach to London, a 3-and-a-half-hour journey. I took about 100 SSRA information brochures and a few dozen wristbands, as I was sure that people at the event wouldn’t know what superficial siderosis is. Whilst waiting for the coach I gave a brochure to an elderly lady that we were chatting with. She was also waiting for the coach to London.

Rhys and his Member of Parliament, Jessica Morden
Rhys and his Member of Parliament, Jessica Morden
Westminster Hall
Westminster Hall

After the somewhat four-hour coach journey (traffic as heavy), my mum and I arrived at Victoria station and decided that we would have food at Westminster Palace, in case there was a long wait getting through security. It was a hot day, and I wish I didn’t take a jacket, but you never know with the British weather. Once at the Cromwell Green visitor entrance there was a large queue to get into the building. The high-level security and armed police presence reminded me of being at an airport. All bags, belts, and items from your pockets had to go into a tray and through an x-ray scanner.

Westminster Hall

After the vigorous security checks, we entered Westminster Palace through Westminster Hall and went into the café on the right. It was very busy, but coffee and sandwiches were much needed after the 40-minute queue waiting to get into the building. Once we’d finished our lunch we went straight to the Jubilee Room where the event was being held. Just after signing in and getting our name tags my MP Jessica Morden came by for a chat about the event and what it is looking to achieve. I explained it’s about pushing to improve neurological services across the United Kingdom, and this was the launch of the My Neuro Servery Results where over 8000 neurology patients’ other carers/guardians had filled in the survey.

There were lots of people in the room, politicians, physicians, and various charity representatives, including a few people I’d spoken to over email which I now had the chance to meet in person. It was a great opportunity to raise awareness of superficial siderosis (and hand out many brochures), as well as talk about my experiences with hydrocephalus, brain tumour, CSF leak, and multiple bouts of meningitis. My mum also spoke to many people and acted as my ears and helped me communicate, although most people were easy enough to lip-read. Marc Smith CEO of the Brain & Spine foundation said he hadn’t heard of superficial siderosis before, and that he would get it added to their ‘A-Z’ glossary of conditions after I gave him an information brochure.

My MP Jessica Morden then asked her PA Daniel to give my mum and me a tour of parliament, which was really exciting. Daniel came by and we left the room for a bit and wandered around the building, before coming back to the Jubilee Room to engage with more people.

Summing It Up

At the end of the event, there were speeches from trustees in the Neurological Alliance, and Debbie, a patient, who had also been attending the co-pro meetings each week. Hat’s off to Debbie for getting up in front of the crowd and explaining what we’d been discussing and what we are hoping to get from the co-pro group. We all have a common goal, and that is to improve neurology care across the four U.K. Nations.

The Neurological Alliance Call to Action

We call on the UK Government, Scottish Government, Welsh Government, and Northern Ireland Executive to prioritise services for people with neurological conditions and establish a Neuro Taskforce. The Taskforce would bring together relevant departments, health, and social care bodies, professional bodies, people affected by neurological conditions, and the voluntary sector to

Access the current neuroscience workforce and set out plans to ensure it is fit for the future.

Share approaches to common problems, such as addressing longstanding barriers to accessing mental, emotional, and cognitive support, driving down waiting lists for elective care, improving the quality and analysis of health and care data, and supporting the transition between paediatric and adult neuroscience services.

Assess the level of investment in research into the causes, impacts, and possible cures of neurological conditions and set out plans to level up investment in areas that do not receive a fair share currently.

Together for the 1 in 6 Booklet

What’s Next?

The next part of the campaign is called ‘Back the 1 in 6’, and it’s all about getting the decision-makers to act on the findings and implement positive change. The petition below is for U.K. residents, and is aimed at health ministers in each U.K. country to address the findings of the campaign and ‘My Neuro Survey’.

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Rhys Holmes

Rhys is a former musician, data analyst, shop assistant,childhood footballer, and a feature writer at Living with Superficial Siderosis. In his spare time, he enjoys watching his favorite football team Liverpool FC. Follow Rhys on Twitter @RhysHolmes

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  1. Fantastic read Rhys, glad you and mum enjoyed yourselves. Thank you for the great work you do on everyone’s behalf, pushing for better understanding across the UK re SS.

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