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So where's the strategy?

NeuroFoundation.jpgPhil Hunt & Steve Bassam on ministerial warm words on NF Type 1

The first ever parliamentary debate on Neurofibromatosis Type 1 (NF1) took place earlier this week in the Lords Grand Committee. As Labour parliamentarians we had been prompted to ask for the debate by parents with children suffering with NF1 and two excellent Labour parliamentary candidates Sarah Owen (Hastings & Rye) and Vicky Groulef (Reading West).

For those unfamiliar with NF1, it is best described as a condition which is genetic, incurable and affects the skin and leads to the development of visible and non-visible tumours. At its worst, it is entirely debilitating; at best, the condition can be managed, but is lifelong. It leads to severe disability, constant pain, itching, cancers, epilepsy, high blood pressure, bone abnormalities, speech and language problems, dyspraxia, learning and behavioural difficulties and mental health issues. The condition is unpredictable – and it mutates and changes all the time.

It is often said that NF1 is the most common but least known of specialist conditions. Across Britain there are 25,000 sufferers, and 1 in every 2,500 births give rise to NF1. This compares with 5,000 people suffering at any one time from MND and 10,000 with Cystic fibrosis. The major problem with NF1 is the failure to identify sufferers early enough and then provide for the care and management of the condition. Frequently it is not picked up until late childhood and by then many of the disadvantages that come with the condition are entrenched.

The key is early diagnosis. The café au lait examination at birth and early record keeping is critical to ensuring effective treatment and support. In preparing for the debate we met sufferers and families and listened to their concerns. What they told us was that despite brilliant work in the centres of excellence in Manchester and London there is no effective national strategy.

Sadly, Health Minister Earl Howe, in setting out the government’s approach in response to the debate, confirmed that impression. In the two years since NHS England has taken over national commissioning for specialist conditions little has happened. A review being undertaken by a task force set up last year appears only to be at a consultative stage in its work. The chaotic and costly reorganisation of the NHS following the Health and Social Care Act 2012 has delayed the bringing forward of a cohesive strategy for specialist conditions. Warm words, a consulting task force, videos at the planning stage and talk of awareness raising among health professionals alone is not a national strategy or plan. Much of the good work put in place to bring coherence by the last Labour government appears to have been sacrificed and lost.

In the debate we invited the Minister to meet with the Neuro Foundation and work across Whitehall departments especially with education. We asked the government to maintain funding for the specialist centres, ensure that research gets into the national plan and also support work to end the sense of isolation that those with the condition suffer. In our view, that is the very minimum required to make progress and counter the neglect and ignorance the condition meets at an institutional level.

Lord Phil Hunt of Kings Heath is Shadow Health Minister and Lord Steve Bassam of Brighton, Opposition Chief Whip in the House of Lords

Published 15th January 2015

For more information on NF Type 1, visit the Neuro Foundation website: http://www.nfauk.org/

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commented 2015-01-24 20:24:40 +0000
Well done to those all that have worked hard to get this condition known, thank you for taking time to put this in front of everyone in Westminster and hopefully we can get results for people and families coping with this condition.

My son when he was born always seemed to have something going on from the day he was born it was his airways weren’t clear so struggled for a few days after ending born to clear this then once that was clear callum started to be sick a lot he then had colic and relfux from the time he was 2 days old going through medication to help him he never liked to sleep always seemed to be crying.
As day/ months passed I noticed he scratched a lot and he had cafe au lait marks on his body didn’t know then this is what they were called at a baby clinic I had ask HV what these were since he was always scratching was told oh it’s nothing just birthmarks not really happy with her not really looking at his body I thought oh it ok, as time passed before callum was 1 we were at bay clinic again seen there was another HV so I asked her again what it was yet again was told oh it’s nothing just normal birthmarks so I told myself second time you have asked its nothing.
As time passed callum failed to eat as a baby he would gag on any lump he didn’t eat foods until he was more into 3 years old until this time it was smooth baby foods and milk callum would stand and scream at the fridge not mowing what was wrong we went over everything callum finally started seeing a speech therapist at age 2.5 when they finally agreed his speech was delayed hardly being able to say one word by this point they refered us to 2nd tier child development doctor as callum. Had poor concentration and could be assessed for speech, by 3.5 callum was described as ADHD but couldn’t be Dx until later so was asked to go back 6 months later to have the same result and refered to school doctor that would see him at the school nursery he would be going to. Doctor seen him after he turned 4 he was then assessed and we waited for second appt, in Feb 2014 we went back to this doctor this time she assessed him and then did a full examination of callum seen the cafe au lait marks asked if they have always been there I said oh yes I asked when he was a baby was told twice they are birthmarks as she continued to look callum over I got more worried as she asked to take pictures of them to show to a consultant at this point it was noted callum also had skin where he had pigment of colour missing too, so as most parents would do after seeing the doctor was go home look up Internet this is where is first heard of nuerofibromatosis never heard of this before and was worried from what I seen but I didn’t panic unless we knew more, that night doctor phoned me and said yes it was the condition she was thinking it might be and he was have to be refered to genetics Ect Ect. In this time Callums behaviour wasn’t great in school his concentration wasn’t great and he was getting frustrated by unable to communicate problem was punished for his behaviour which lead to callum being on reduced time with in nursery, I have battled with school by July 2014 I fought for him to get a base place for started p1 after the summer as I knew he wouldn’t be able to cope in a class setting thankfully he was giving one giving abit of peace of mind before going into summer, during the summer hols callum was indeed Dx with nf1 from genetics just by looking at him test results just come back end of dec saying he does have a change in his nf gene unknown where this has come from me and my husband now have to go through testing trying to leave our daughter out of it for now if we can callum also a few months back has be Dx with ADHD and I have now had to give him medication as school fail to sit and understand callum in his frustrations and communication problems school has started very negative for him he has not long be giving a courting exclusion letter due to the fact school trigger behaviour they then stand back and wonder they he acts the way he does we are still looking into ASD or PDA, we are so unsure of what the future holds for callum and feel very on our own at time if it wasn’t for finding others on line and gaining advise and knowledge and doing my own training on how to cope with my own child I don’t know where we would be with school Iam sure he would be excluded before now if I didn’t know how to fight the system.
commented 2015-01-24 16:57:49 +0000
I am now 60 and was diagnosed with NF1 when about 13 or 14 round about puberty. Round about this time lumps started to come up on my chest so aware that other girls in my class were sniggering at me behind my back, I went to the doctors. Having diagnosed with the condition he called van recklnhausens I was then told not to be so sensitive! That phrase has haunted me ever since.

I have been fortunate enough to meet and marry a very supportive partner despite the increase of tumours on my skin all over my body now.

Over the years we have supported the charity now known as The Neuo Foundation and my late father was present at the Symposium in the late eighties where many international doctors met for the first time which led to the exciting news of finding the chromosome for both NF1 and NF2 having pooled all there research together. This in the days before the internet was a huge step and we were then optimistic that cure would be found. Maybe not to help me but certainly for any grandchildren I may have.

However three decades on and the condition has been found genetically speaking to be hugely complex and although in the early days of the charity we had tried to get awareness out there, we are still no further forward and in some ways the awareness seems to be even less.
I decided against having children.

My mission is to always give support to those who have children with far more devasting forms of this condition than I have. I have severe disfigurement and have had work but some of these kids are not getting support where needed. This will lead to them not getting jobs and being on permanent benefits or worse if the system breaks down!

Therefore I was thrilled that Vanessa and her team was able to get your support which led to this debate I hope that this will lead to more progress than I have seen for many years.

In those early days of the charity two young doctors dedicated their careers to NF and now run the only two clinics in the UK for Nf in Manchester and London and I would like to take this opportunity to say thank you to them for there dedication to this complicated condition.
commented 2015-01-24 16:55:12 +0000
I am Cassie I am 24, I have NF1. I suffer from chronic pain daily, sometimes it is so bad it is debilitating so I need my wheelchair for outside the house, my body is immune to painkillers so there isn’t much the doctors can do for me, I have recently been given a new set of painkillers to try and if these don’t work then my pain specialist can no longer help me. I am the only person in the family to have NF, I have an amazing supportive group of friends on facebook, 2 being Nicole and Vanessa Martin. They have always been there for me and are really helpful, more helpful than some of my doctors at times. Because my pain is unseen nobody knows I have anything wrong with me, my pain causes chronic nausea on a daily basis so I am on a limited diet, I hope to bring more awareness about Neurofibromatosis.
commented 2015-01-24 13:12:45 +0000
On the 24th April 2013 we found Emilio in bed early morning after having what looked like a stroke! We were rushed to A&E at Hinchingbrooke in Huntingdon where he had a further seizure and became very poorly. After numerous tests he was diagnosed with Neurofibromatosis or NF1 for short. In 2014 he suffered another seizure at school and is now taking anti Epilepsy medicine. We also discovered he has hydrocephalous (fluid on the brain) which may require further surgery. All Emilio’s conditions are unrelated…just very bad luck! Neurofibromatosis is a neuro-genetic condition affecting the nerve tissue, Emilio may live a long healthy life or he may be dealt with numerous medical conditions which include: skin lumps, large disfiguring benign tumours, tumours on the nerves of sight, curvature of the spine, brain and spinal tumours, internal tumours, increased risk of epilepsy and malformation of the long bones which can cause problems in children and may result in operations/amputation. Neurofibromatosis is more common than Cystic Fibrosis but still there is little known about it. Emilio is our inspiration, he takes everything in his stride and always has a smile on his face.
commented 2015-01-23 20:25:51 +0000
my son is now 5 and got his diagnoses at nearly 2 when we went to see physio about his late walking she noticed his café au lait marks and referred us to Manchester genetics team we went for the appointment and they briefly explained his diagnoses and things which would then happen and then was left to it and went away as worried parents expecting help and support.

we then went online looking up nf1 which still to this day wish we had never done because it just scared us half to death so went to our local gp who didn’t have any or or very little knowledge of the condition but then referred us to Wigan

our appointment day came and we again got our son checked over had abit more information was promised the earth and everything will be done correctly and my son would have a special sight test to check everything was ok

I had to ring up the Wigan team once again for a follow up appointment which was ment to be given yearly and finally we received an appointment at Leigh for a sight test which we had requested Manchester as they deal with this type of condition on a regular basis but we attended Leigh and everything was thankfully ok

after this I was arranging a party for my sons 5th birthday and the lady who did his party put me in touch with a local parent who’s son also had nf1 and we got talking she told me about an online support group for the condition and I was very surprised how common the condition is and got speaking with a few local families who’s children had the same thing

I then contacted Manchester again they had all of my sons details but we never got an appointment and told us that he had somehow slipped through the net so we spoke about any concerns which I had

nf1 never really effected my son until starting reception and he was struggling with his work physical activities and dressing himself so I went to my local gp again and finally after going through the symptoms I finally got a referral for my son to see an OT to help with his fine motor skills which he now is getting some help with the things he needs

in my opinion there should be more help and information available from the nhs and even funding for parents who have children with nf1 as I personally felt isolated and alone before the support group and a special friend which I met we did raise a little bit of money for nf1 families and went to our local newspaper to advertise the charity event which we organised and handed out information on the condition on the day to make people aware of nf1

help and support surely shouldn’t be so hard to find I do wonder how many other families face the same struggles as I did and teachers and health professionals should be made more aware of nf1
commented 2015-01-23 13:38:33 +0000
Similarly I was not diagnosed until I was nearly 30 and even then was only told that I had the same thing as Elephant Man (how incorrect and how poor of the doctor to be so ill informed). I was not offered any help or support for years until we moved to a different area and then was seen by the clinic in Oxford – quite a journey from home. By then, I was expecting my first child. I am 52 now and my kids are in their teens
. I now know why I found various things more difficult than others such in school. Sadly back then I was made to feel stupid. All 3 of my children have Nf1. I do find that I have to explain over and over again what Nf1 is to all manner of professionals whether they are doctors, nurses, other health professionals, educators…. The knowledge is sadly lacking just in all the places that Nf1 should be understood and supported. I hope this debate will raise the profile of the condition and will help to get early diagnosis along with the right support for each individual in all areas of the country, after all Nf1 affects us in so many different ways. Not all of us can travel to Guys or Manchester, so more hospitals need to be offering support for this too.
commented 2015-01-23 10:41:52 +0000
I would like to thank everyone who helped get this debate and so helped raise the profile of NF1.

My wife was not diagnosed with NF1 until she was thirty, which meant that both my children were diagnosed shortly after they were born. This meant that they were able to get extra help at school. However, I am worried that many people may not be diagnosed until later in life, by which time they will have missed out on valuable help at school.

My family are also fortunate enough to be seen by the Guy’s Hospital NF centre, but I am concerned that not everyone with NF1 gets this level of support. The national health strategy really needs to ensure that everyone with NF1 gets to see an expert in the condition regularly.
commented 2015-01-23 10:34:04 +0000
I was diagnosed with Neurofibromatosis when I was 2 years old, although I personally found out when I was a little bit older. I am the first, in the family to have this condition, and hopefully the last.
There wasn’t that much support avaialbe at the time and I founded support and others going through the same from a charity in Scotland to help those and their families with Neurofibromatosis. This support was amazing, and I know I wouldn’t be where I am today with out finding that support and the opportunity to find others and meet others going through the same as me.

Although, now that the charity is concentrated on children, which is great in it’s own right and gives the children a positive start and outlook with their condition giving confidence with in themselves, something that I never had. There isn’t much support and organisations which support adults living with the condition, up Scotland way anyway. Which I would feel would help the cases of those in ‘isolation’ with in their condition.

It’s great to see NF get a mention and come to light in other areas, and for people to get an understanding on what NF involves and the problems that it can cause for those living with it.
commented 2015-01-23 10:18:29 +0000
So lovely to see a debate on NF – for a genetic disorder that is actually one of the most common, it has always surprised me that it wasn’t higher profile in the medical profession. My 5 year old daughter has NF1. We are very fortunate as this was picked up by a very astute GP when she was 3 and her paediatrician at Southampton General Hospital is excellent and knows all about NF. We have been fortunate at getting my daughter diagnosed early but I know from talking to others that I we had lived elsewhere in the country, this may not have been the case. It does seem like a postcode lottery.
commented 2015-01-22 23:45:04 +0000
My daughter was diagnosed with NF 1 aged 9. Her greatest advances have come through homoeopathy, osteopathy, GAPS diet and Neuro developmental therapy. Non of these are available on the NHS. We have been ridiculed by NHS staff because even though they could see the improvements ( loss of unexplained severe pains in her tummy and legs, speech improvement, massive improvement in behaviour and sleep, confidence , yes, she gained some self confidence, growth, from the 2nd centile to the 50th within a year of following the GAPS diet, to name but a few). We did have a fantastic occupational therapist, however speech therapy and physio, due to the nature of NF never was enough. A standard 6 sesions just cannot address the ongoing needs. She has learning difficulties, we tried school but it just could not provide a safe and supportive environment, so she is back to being home educated, and requires a lot of support. We pay for all of this. It is good to see this condition being addressed in The Lords.
commented 2015-01-22 22:26:11 +0000
Lots of kids have problems making friends but particularly NF1 kids. This is what my daughter who has nf1 wrote tonight.
‘Girls in my class are no it interested in me at all. This upsets me because it feels like I am alone everyday. Also at break some of the girls in the class ask me to play. I can’t play because I am bad at running and can’t catch up. I d
on’t want to be ‘it’ all of the time’
commented 2015-01-22 17:55:38 +0000
I have got nf1 so has my daughter there is very little still none about this for example I seen a different doc and say we have nf1 and they look at u an say what is that. I have learning disabilities and my daughter is delayed in some parts of her learning it causes heart ake that there is so many people effected but yet so little is known. We both have regularly check up Mri scans bloods done and also eye site as nf Can change in a blink of an eye.
commented 2015-01-22 14:18:09 +0000
I have a grandson, great grandson and great granddaughter who have NF1. Over the past few years I have witnessed the total lack of understanding of this condition among a diverse range of professionals. So, it was with almost joy that I read of the Parliamentary Debate about NF1 by Labour Parliamentarians in the House of Lords.

I have watched my granddaughter suffer unimaginable pain while fighting on behalf of her small daughter. Yes we know all about brick walls in our family because she had to batter her way through many before obtaining a diagnosis of NF1. However, by that time my great granddaughter had lost all her sight. Chemotherapy, both long and short stays in hospital, continuous check ups, MRI’s, ECG’s, et cetera have become regular occurrences. Therefore any actions on behalf of the government and or opposition party can only be welcomed, but please ensure any such actions are positive and do not result in party arguments.

I realise that these comments are sent to the House of Lords Labour, but I’m sure that the Prime Minister would fully understand the heartache of having a child with a severe disability, especially when each day is a bonus, as there is no light at the end of the tunnel. My granddaughter now has the help, awareness and understanding of NF1 by the professionals but she does still have to fight on behalf of her three year old daughter, in order to access many areas of help, which are often kept quite ‘hidden’.

I accept that these comments are very personal, but being quite an ancient lady, I do still believe that those in government and in the opposition party do have the power to form strategies that can have positive results for NF1 sufferers, providing they listen to the voice of those sufferers and their carers.

I thank Lords Labour for initiating the Parliamentary Debate.
commented 2015-01-22 12:32:48 +0000
My adoptive son was born at 35wks, pediatricians had called in a geneticist has they were concerned he had Foetal Alcohol Syndrome, due to his birth mothers abuse of drugs and alcohol during the pregnancy. He was finally diagnosed with Neurofibromatosis 1 when he was a year old. my G.P. and various Paediatricians do not know enough about NF. They pull out books during appointments to try to answer any questions you may have, which does not instill any confidence in the care my child is receiving. My son has various “lumps and bumps” which i have been told are lymph nodes etc. He has learning disabilities, speech and language difficulties, low muscle tone, fine and gross motor skill problems, nocternal enuresis and behaviour problems. We had a feeling that he has autism and adhd. The behaviour problems were being seen by the drs as caused by us!!!( how dare they, we have 4 birth children who are all well behaved, have been to university and who have very good jobs, and we have looked after various foster children). We have been taking our son to the local CAMHS for five years they said he did not have adhd or autism, they offered no other help or diagnosis. Although we live in South Wales out of desperation we enrolled him onto the SANTA trial in Manchester, knowing that he would have a full assessment from them alongside helping others with NF. The first day in Manchester he was diagnosed with Autism and ADHD. the doctors there were shocked that he had not received any diagnosis or help locally, and have since written to the local team. We were also told that he has around 25 genes missing and remember the “lumps and bumps” well they turned out to be plexiform neurofibroma and multiple nodular neurofibromas. I cannot thank the team at Manchester enough for all the help and care they gave my son, he also had a full Neuropsychological report. The psycologist rang my sons educational psychologist and she has now agreed that he needs to be statemented despite him having been in a sen unit for the last six years without one. The local CAMHS have appologised for the wrong and lack of diagnosis and help and they have once again taken over his care from Manchester. During our last paediatric appointment the Dr said that maybe she should ring the team at Manchester to ask “how they should be looking after Nf patients?” It would be fantastic if we had more units like Manchester and London or maybe the cheaper option would be for ALL doctors and professionals to have training about neurofibromatosis. we have to fight for everything Education, Health, Disability Living Allowance etc. A day with my son is exhausting enough without having these extra fights.
Thank You Lord Hunt, Lord Bassam, Vanessa, Nicole Martin and Nikki Clifford for all your hard work in trying to change things for the better.
commented 2015-01-22 12:15:39 +0000
Thanks to all those involved who got behind this debate and highlighting the awareness of NF1. I really hope that we can support one another and that change does happen to help improve the health,education and lives of those living with NF1. Early Diagnosis and access to the right medical care is so important for NF sufferers but sadly so many GP’S and other health professionals have limited or no knowledge at all on this condition. I support the Neuro Foundation as my son and I both live with NF and hope this debate will result in a more positive change in receiving funding and raising awareness to help find a cure.
commented 2015-01-22 11:45:45 +0000
Thank you for talking about NF! My six year old son has this condition, as does my husband. My son is affected badly and is unable to speak, has severe learning difficulties, developmental delay and will need support all his life. He can not communicate if he is in pain or troubled by his tumours in any way. He can not tell us about any changes either. So the only way we can help him is having trained staff in his education, health and social life who understand NF. Sadly we are not experiencing this so it is up charities and people like yourself to help my family.
Thank you for speaking up for my little boy who has no means to speak for himself.
Love from a grateful mum x
commented 2015-01-22 11:44:29 +0000
Thank you for helping the NF1 community in highlighting the lack of awareness.

Whilst, fully acknowledging, those that work tirelessly to support families, there is often a general lack of knowledge and experience among heath professionals and insufficient funding for this condition.

I support the Neuro Foundation and a local group in the Southwest who work hard to raise funds and the profile of this condition.

Debates are fantastic, but these need to be followed up with positive action. I feel, it is also essential to avoid any political point scoring about the NHS in the UK by individual parties!

Let’s all work together to support change, and those with the condition. Many of whom, cannot speak for themselves.
commented 2015-01-22 11:03:24 +0000
I would like to start by thanking everyone for getting behind people with Nf1.
People who suffer from this cruel condition deserve to be treated with upmost respect. There are some really understanding doctors, my daughter and I do have excellent care from all our doctors who are very understanding of our condition and how it effects our day to day living.
I had been on sickness benefit for a while due to health problems some of which are caused by Nf, I am in pain daily, wear braces on both hands and knees, walk with aid of crutches and take many pain killers including morphing, which makes me really tired. But due to government changes my sickness benefit was stopped in June last year, the reason being that I had been paid for 365 days and the government say you can no longer be paid after this time. I asked for my case to be looked at again and I am still waiting that was seven months ago, the DLA have received letters from my doctors confirming my health issues. I have been told it could take ten months before my case is looked at and in the meantime I have no money coming in from anywhere and I still have to pay for all my prescriptions and dentist. I am on nine different medications a day so it is very expensive.
Just before Christmas I was in hospital over night after having 25 tumours removed from my back. My health is not going to get any better, there is no cure.
We should not have to deal with these constant battles with DLA .
I would like to wish everyone luck with getting more help from their NHS and with the DLA. We are not asking for anything we are not entitle to, nf is very difficult to live with.
commented 2015-01-22 09:55:47 +0000
I am very gratetful to everyone who made this debate possible, especially Vanessa,Nicky and Nicole.I really hope that the advice and suggestions made are carried forward to help improve the health,education and lives of those living with NF1.I was diagnossed at the age of 30 when I was expecting my first child. Because of this my children were diagnossed at a young age. They both have statements for their education. If all children with Nf were diagnosed at birth or soon after this would give them a greater chance of reaching their full potential. About 6 years ago I had a internal neurofibroma removed which could have become cancerous. My symptoms were not that obvious so had I not had a diagnosis I might have over looked them,certainly a G.P would have done and the out come could have been very different. It is so important to get a diagnosis and access to the right medical care when needed.
commented 2015-01-22 00:40:58 +0000
Rather than bickering over which logo is used and which region or location we live in, let’s focus on the reason for commenting on this blog and strive for improvements in raising awareness of NF as well as other life long debilitating and life limiting conditions.

Patient and family centred care is pivotal to the success of campaigns such as these. It empowers all affected by the condition to make choices about their healthcare. When hearing patients and families sharing their experiences, the need for improvement is immediately apparent and the case for change becomes compelling.

Considering service provision and care treatment pathways from the perspective of those affected, directly and indirectly, is a fantastic way of helping healthcare professionals view care delivery and service development from a new perspective.This becomes a powerful motivator and driver for change, helps to improve clinical staff engagement and increases knowledge to identify these conditions at an early stage so that expertise can be sought promptly.

There are many experts within the NHS working tirelessly to support those affected by these conditions but are faced with an upward struggle against government driven targets and initiatives;financial restraints and repeated criticism.

Having worked in the NHS for 30 years, I have witnessed considerable changes to improve outcomes and life expectancy for sufferers of conditions that once were unheard of.

Let’s pull together and support the NHS strive for improving the care for these awful conditions.
commented 2015-01-22 00:08:22 +0000
I am 28 and was diagnosed with Neurofibromatosis at 18 months, I have had my mum tell me how she would take me in for cheek ups and having to explain to GP and other doctors about NF now i am 28 i have the same problem having to explain NF to my GP. Al tho i would say i Have a mild case of NF the things other people find easy is not always easy for some one with NF walk to to the town can be a struggle dew to tumors on the Leg, Back where ever they are as well as growing up in school with a facial disfigurement how ever small being picked on cos you are different so even to have NF descused in the House Of Lords is amazing and thank you to all thoes who have taken part but more dose need to be done to spread information about NF and more funding for not only finding a cure but to make life easer for people with Neurofibromatosis
commented 2015-01-21 23:01:59 +0000
Firstly, thank you for taking on our cause for better care and diagnosis of Neurofibromatosis Type 1. Thanks to all the Lords, MPs and parent’s who have been involved in raising this most important issue.

My daughter wasn’t diagnosed with Nf1. It hit her like a train! There were several opportunities to diagnose her with the condition, all of which were missed. Several GPs and Paediatricians commented on her Café au Lait (CAL) marks, none investigated or recognised these obvious signs. This fact nearly paralysed her. I had to carry her into the MRI, screaming in pain because she couldn’t walk. She has undergone 2 spinal tumour de-baulking operations and is currently under going 85 weeks of chemotherapy. She has learning difficulties and has all together caused us 5 years of uncertainty, worry and much heartache. All of this could have been avoided.

I guess it would cost very little to include CAL checks into the Red Book at various ages, anybody can spot birth marks can’t they? The Health Visitor or GP would just need to flag these up. It would also help to highlight a raft of other genetic conditions, at least one of which is more common than NF1. Incidentally, I’ve noticed the Government are spending approx. £54 million on an anti collision for RAF Jets that would ‘maybe’ help to save the lives of probably a few pilots over the life time of the aircrafts (a worthwhile piece of equipment I might add). I’m guessing that these CAL checks would cost a fraction of this price and would definitely guarantee that lots of children do not have to go through the experience and pain that my daughter and lots of others have had to go through.

These aren’t near misses or accidents, these are actual incidents that we knew would happen and happen on a daily basis. If this was a plane collision it would be considered as negligence on someone’s part I’d say, as we know the risks and the statistics are good. If you ask the NHS Specialists outright they will have to admit that they aren’t surprised that our kids are ending up in this sorry state, there is nothing in place at the moment to prevent this from happening. A lot could be achieved with just a few simple, cheap, easy checks.

This really isn’t good enough and you’ve gone a long way to point this fact out. All the best with the remainder of the campaign. Thank you.
commented 2015-01-21 22:32:52 +0000
My 7 year old daughter has NF1 and it was a spontaneous mutation and was diagnosed just before she was 4 as a physio we were seeing following her operation for hip dysplasia noticed the café au lait marks and referred us to a paediatrician who then referred us to Manchester Genetics. When she was diagnosed we were told we would not be seen again at Genetics until she was 16, how can we not see a specialist for 12 years? We see a phsyio and OT to try and improve her gross and fine motor skills but have been informed by them today that they are discharging her as there is nothing else they can do to help her. I have seen them google things I have said to see if they are NF1 related as they have no knowledge of the condition. We are also under Speech Therapy and they also want to discharge saying her speech may now be as good as it will ever be. How can this be when she clearly needs help, but now its upto us as parents to support her. Our local paediatrician is not an NF1 expert and just files any concerns I have in my daughters records. She has requested a review in school by an Education Psychologist 3 times but the school are refusing saying academically she is doing fine. They are not taking into account the problems with social skills, bullying, memory, following instructions, organisational and co-ordination problems. We have had to fight to be seen again at Manchester and are now undergoing assessments for ADD and to see if on the autistic spectrum. I have also written to my local MP who is the Shadow Health Secretary over 2 weeks ago to highlight the lack of help and support we have had and have not had a reply back from him yet. Thank you Lord Hunt and Lord Bassam and Vanessa and Nicole Martin and Nikki Clifford for all their efforts & hard work into pursuing this bill to The House Of Lords.
commented 2015-01-21 21:22:53 +0000
My son & husband have Neurofibromatosis type 1, so any awareness to this fairly common but mostly unknown condition will be great fully received for sufferer’s & their family’s. My son has learning needs which we had to fight to get him statemented, he is under a paedicatician & has regular eye clinic visits to the hospital. My husband was diagnosed when our son was a baby & had been growing up into adulthood not ever knowing he had the NF medical condition. He stuggled at school and has since had various operations to remove tumours internally & externally ( on the waiting list to get more painful tumours removed at present time). We are thankful to Vanessa & Nicole Martin also Nikki Clifford for all their efforts & hard work into pursuing this bill to The House Of Lords. This is a horrible life long condition and it is paramount that more help and awareness is made available for the sufferers now & for the future generations. Many thanks for hearing us out. Angela Pomfret.
commented 2015-01-21 21:02:56 +0000
As a parent of a child who has NF 1 and as a sufferer myself, its as all of you you associated with NF very difficult to try and explain to people about what is like to gave or deal with it when they have never heard of it… My family and are very greatful that a debate was held last week on NF to raise awareness with the hope that more can be done to help people with this dreadful disease.. Although the Neuro Foundation are mentioned in the blog the real people who need to be credited for all their tireless efforts and work of getting all our voices heard and for getting this debate to Lords goes to VANESSA & NICOLE MARTIN & NICKY CLIFFORD. A huge thank you to you special ladies, NF is now hopefully going to be known..
commented 2015-01-21 20:59:16 +0000
I would like to extend my heartfelt thanks to you for getting behind this, people with nf deserve to be treated with respect and to receive the healthcare they deserve, all people with nf not just those lucky enough to have a good dr like dr Huson in manchester. I was extremely disappointed with the ministers response which was at best rhetoric and at worst insulting, he showed no understanding of many of the people with this condition who face depression, anxiety, learning disabilities and an uncertain future, who cannot walk down the street without being insulted by a stranger just because of the way they look. Constant battles with the nhs, dla etc are exhausting and unfair when there is already a heavy burden just having the condition or being the parent of someone who does. I really hope you can enact the proposed changes.
commented 2015-01-21 20:51:50 +0000
I don’t know what to say really. I have written to my MP (conservative) who was not helpful at all, he didn’t seem to be in the slightest bit interested.
I have a beautiful 3 year old daughter who has NF1. She is my entire life particularly after her father left us the day she was diagnosed.
I have had to battle alone every step of the way to get appropriate advice, referral and treatment for my little girl. My GP openly admits to knowing less than me about NF1. Indeed it was missed on numerous occasions by numerous health care professionals prior to her being diagnosed. It was even suggested that my childs birth marks were bruises.
I therefore had to go privately to have her diagnosed. The paediatrician I saw never even sent me his bill because he obviously knew very little himself but at least he referred me to the genetics department rather than dermatology as my GP did!
All this is just not good enough. I deserve to know and trust that my only child is being seen by appropriate doctors with appropriate knowledge regardless of where I live.
I sincerely hope that this debate is the beginning of change because it’s so needed and unfortunately many people who have this incurable, unpredictable and often devastating condition are unable, for many reasons, to speak out for themselves.
commented 2015-01-21 20:02:54 +0000
Stories are all very similar…the lack of knowledge and awareness and the constant fighting for our children. Even when someone has heard of NF they are very dismissive of it as a condition. My head bashes with a brick wall at least once a week. My daughters care is now excellent ( should be on chemo!) but I was ignored for months and months before her diagnosis and it cost her her vision. I still have to fight for my son though. People don’t know what NF is so its easy to ignore something you don’t understand.
I’m so pleased that this is moving forward.
commented 2015-01-21 19:56:50 +0000
Sorry for the rant but it’s very frustrating. Thankyou lord Hunt and lord Bassam for your help so far
commented 2015-01-21 19:54:32 +0000
My son has nf1, his was a spontaneous mutation. My local mp is Andy Burnham, the shadow health secretary! I asked for him to help on two issues. 1. The fight I’m having to get my son support and an ehc plan with my local authority going against paediatric advice and the advice of the independent educational psychologist! 2. To help bring awareness about nf so that more professionals recognise the condition and its effects. After sending a letter to the health secretary the response was laughable! You’d think he’d at least look into nf and make sure he had his facts straight! Stating nf is a hereditary condition! Explain why my son has it and I don’t then…. I seriously hope the powers that be start to take this seriously and not just fob us off with platitudes. The nf community need help and support so please help! It’s hard enough to live with not knowing what road nf will take you down without the added worry of knowing more than your gp about nf. Having to fight for support when too many services are being cut. As for local care, Pft! What local care?! That depends on where you live! My son is classed as having non-complex nf, this by no means he doesn’t struggle. He has learning difficulties, development delay, add, speech difficulties and possibly asd. He’s 4, early years help is important so why are we having to fight so hard? Please help us help our children!

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