Phil 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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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.
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.
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
. 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.
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.
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.
‘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’
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.
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.
Thank you for speaking up for my little boy who has no means to speak for himself.
Love from a grateful mum x
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.
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.
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.
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.
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.
I’m so pleased that this is moving forward.