Nerve Tumours UK

Founded in 1982, Nerve Tumours UK (NTUK) is ‘the leading voice for people living with NF’ of which there are 26,500 in the UK.

NF is the new medical group name for a set of neuro-genetic conditions that cause tumours to grow on nerve endings Neurofibromatosis Type 1, NF2-related Schwannomatosis, and Schwannomatosis.

Nerve tumours can occur on and under the skin (internally) and NF can affect anyone regardless of race, age or gender.

If you have the condition, there is a 50% chance of passing it on to your child.

It is a genetic condition which manifests in various ways depending on the person.

NTUK is here to help by providing many different services: the National Helpline, Information Days, regionally based Specialist NF Nurses, Online Community Support Groups, Information Packs and Leaflets and Professional Conferences.

According to one of their leaflets ‘more people are diagnosed with NF than those with Hereditary Muscular Dystrophy, Huntingdon’s Disease and Cystic Fibrosis combined, yet few including medics have heard of the condition.’

Recently, I spoke with Karen Cockburn, Head of Nerve Tumours UK to find out more about the work they do to help the NF community.

What do the charity’s Specialist NF nurses do?

Karen explained that the charity’s Specialist NF nurses are their core service, supporting and advising patients medically, for example, in clinical procedures and mental health.

They can also help with non-medical matters such as claiming benefits, in schools, and in the workplace as their ‘employer might not understand the manifestations of NF.’

Although NTUK funds these nurses, they are NHS based nurses which means they have access to medical records so have the advantage of being patient specific.

Karen mentioned that these Specialist NF nurses can help with ‘a whole host of things, it’s not just medical questions you can come to my team for. Every single thing that you need in terms of your NF and your daily lives, can be addressed, so hopefully we make a huge impact.’

What happens at the charity’s iNFormation days?

On the 5th October 2024, NTUK held a medical information day in Nottingham which included talks from one of our Specialist NF Nurses, Carolyn Smyth (who operates the national helpline), Dr John Ealing (Consultant Neurologist) Mary Thomas (Lead Clinical Nurse Specialist for Pain Management), and an expert in ‘claiming PIP’ (Personal Independence Payment for working-age adults with disabilities or health conditions).

These information days also involve members of NTUK's own team talking about ‘the charity and services [they] provide.’

For those who are unable to attend in person, each information day is made accessible to all as it is live streamed. In fact, their day in Nottingham had 1600 people viewing online.

Recent Sky News Report about Oliver Bromley: What happened? What was the NTUK and NF community response?

In October, there was a Sky News report about Oliver Bromley who has NF1.

He was a victim of a hate crime as he was asked to leave a restaurant for ‘scaring customers.’

He found out that this restaurant was cash only, went to a cash point and when he walked back in, he was asked to leave.

Understandably this was upsetting, and he was ‘shocked to the core’ due to how he was treated.

In response to this, Karen wrote to the restaurant which didn’t respond, and UK Hospitality Trade Association with whom she is now ‘working with on a campaign to raise awareness of NF across the UK Hospitality industry’.

With this campaign, she hopes to achieve two aims: ‘ to educate the hospitality industry about the condition, so that nobody else suffers this treatment, and also to raise awareness amongst industry employees that we are here to help if they are diagnosed with NF, themselves’.

She ‘was horrified but not surprised’ as this treatment is ‘sadly not something that’s uncommon’ with members of the public stopping people with NF on the street to ask, ‘What’s wrong with you?’

Karen went on to say ‘Some people say [these things] out of fear because they don’t know if it’s contagious, that but there’s a way to ask things. I think the only way round, is to educate people [so] working with UK Hospitality is really important.’

What does NTUK do for children with NF?

NTUK work with young people in schools and can help by working with the school to obtain an EHCP for the child, or by sorting access to equipment, for example, larger pencils or pencils with grips as they may have neurofibromas on their hands.

The charity can also provide access to fiddle tools as NF can cause learning difficulties, and higher chairs as ‘people with NF tend to be a little bit shorter.’

NTUK will step in to provide support upon new diagnosis which tends to be when the child is very young.

If it is a de novo case (which is if neither parent has the condition and is 50% of all cases) then ‘we’re likely to spend a lot of time with the family because it will be an absolute shock to think your perfect little baby has this lifelong condition.’

NTUK get involved again when the child starts school or nursery because they ‘offer a program called iNForm’ which has 4 separate campaigns: iNForm your school, GP, workplace and university.

When the child starts school, they will have a ‘round the table meeting’ and ‘work with everyone involved in the welfare of the child […] to get an educational plan in place’ to ensure that if the child has special needs, they can access extra time and get help from support staff if needed.

‘We educate the teachers about NF, and likewise, thereafter once they’ve met my specialist nurse if there’s any questions, they’ve got someone they can go to.’

What is the transition to adult services like and how NTUK help?

They help ensure that the transition from child services to adult services is smooth because ‘when you’re a child under paediatric services, you’re seen regularly- all the time, However, when you turn 18  and you transfer to adult NHS services, you don’t get seen unless there’s a reason.’

Adults with NF should have an annual check-up at their GP but GPs often question why they should have to do this as ‘if [the patient had] diabetes and had to have an annual check-up [GPs] get paid for it, [but they] don’t get paid to do annual checks for NF.’

This is ‘very short-sighted’ as an annual check-up is only 10-15 minutes and ‘if they do that for the cost of that 15 minutes it might actually nip a problem in the bud’ whereas missing that appointment could result in a bigger problem ‘that then ends up with them in hospital costing many thousands in the treatment that they have.’

NTUK’s online store

Karen told me that ‘a few years back [NTUK] decided to open up an online store’ which sells Christmas cards, mugs, jumpers, tote bags, aprons, coasters, water bottles and much more!

However, it is important to note that ‘the shop is not a big money spinner for [them]’ as it is the NF community who will be buying the goods.

‘Research shows that by the time there are three levels in the family with NF they’re likely to be in the lowest socioeconomic group so they will not have a lot of money’.

Therefore, ‘in some cases [they] only make pennies on each of the goods’ as they don’t want to exploit their own community.

How can you get involved and raise awareness? Digital ads?

Getting involved with the work that the charity do is very important as they ‘don’t receive any government money whatsoever’ and even the smallest amount can make a huge difference.

‘Raising awareness is equally as important so we have people who hand out leaflets and do collections for us in shopping centres.’

The charity has worked closely with a creative agency and digital advertising board company for several years to ‘create a series of digital ads across railway stations’ which they will also be funding next year during May, World NF Awareness Month.

Last year when Thomas Young (British Paralympian with NF1) featured in the digital advert, it reached 3.5 million people and ‘the response from the community and medics has been really great.’

I would like to thank Karen Cockburn for her time in providing insight into the essential work of the charity.

For more information about NTUK, please see their website: https://nervetumours.org.uk/