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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 2015-01-21 18:13:56 +0000
Thank you! We have started our own awareness campaign down in the South West. It’s small and we are workig hard to get NF ‘out there’. My husband and son have NF as does my 3 year old daughter who started chemo at a year old to try to stabilise her tumours which have left her blind. Let’s stand together and make a difference :)
commented 2015-01-21 18:04:48 +0000
I think it’s great that NF1 (and therefore the people it impacts) is getting a voice in parliament. Well done to all involved and may it be the start of raising better awareness and understanding. We’re relatively new to this roller coaster ride but it’s one we’ll never be able to escape from. Any support, education, funding and care can only be a good thing – if it reaches the right people. Thank you.
commented 2015-01-21 14:35:29 +0000
Dave – could you drop us an email to HoLOppositionWhips@parliament.uk with a bit more detail, including the name of the MP and your post code?
commented 2015-01-21 13:45:58 +0000
I suffer with NF and had my story in local newspapers. I’ve even contacted my Local Labour MP and yet I’m still ignored. I’ve worked hard to raise awareness but obviously my face doesn’t fit
commented 2015-01-16 20:43:00 +0000
Completely agree Diane. It’s an amazing effort from the politicians involved and the parents. I’ve read the debate and all of the points need raising. My only point is The Neuro Foundation logo. They aren’t NF UK!!!! In fact, they’re self absorbed, fund raise for their own existence, and don’t actually care about anyone. I’m not talking about their advisors either. They’re doing a good job under difficult conditions. I asked for help on their Facebook Page, they deleted my comment, and sent me and message asking for £15 membership to get access to their newsletter and gave me information on how to fundraise for them. This is how they cared for me when I was beside myself with worried about my son. Needless to say I didn’t become a member. I’m surprised the Politicians are even talking to this organisation. My opinion of course.
commented 2015-01-16 20:06:49 +0000
Totally get where you’re coming from Jock, but we have to start somewhere. Believe me as a parent involved in raising awareness, its taken years to get a political party to help. By even having this debate it will hopefully help ‘fill in the gaps’ and show how poor services are across the whole of the UK. Let’s hope there are better times to come for the NF1 community, we deserve better. Time we made NF1 as ‘popular’ as cancer.
commented 2015-01-16 20:06:48 +0000
Totally get where you’re coming from Jock, but we have to start somewhere. Believe me as a parent involved in raising awareness, its taken years to get a political party to help. By even having this debate it will hopefully help ‘fill in the gaps’ and show how poor services are across the whole of the UK. Let’s hope there are better times to come for the NF1 community, we deserve better. Time we made NF1 as ‘popular’ as cancer.
commented 2015-01-16 20:06:47 +0000
Totally get where you’re coming from Jock, but we have to start somewhere. Believe me as a parent involved in raising awareness, its taken years to get a political party to help. By even having this debate it will hopefully help ‘fill in the gaps’ and show how poor services are across the whole of the UK. Let’s hope there are better times to come for the NF1 community, we deserve better. Time we made NF1 as ‘popular’ as cancer.
commented 2015-01-16 19:50:49 +0000
Congrats on the awareness raising. I’m a bit surprised by the logo you’re using here. You’re talking about Nf across Britain and using the Neuro Foundation logo. They don’t support effectively anywhere but England, and that’s debatable. NF is not about The Neuro Foundation. Other than that, great work and thank you Lord Hunt, Lord Bassam, Sarah Owen, Vicky Groulef and the parent who raised the issue. Good luck with getting a result.
commented 2015-01-16 18:36:39 +0000
Thank you for helping the NF1 community in highlighting the appalling lack of awareness (particularly among heath professionals) and funding for this condition.

We’ve had enough of platitudes like those given by Health Minister Earl Howe on how brave those with NF1 are. Why should anyone have to feel brave to just go about their daily business without fear of ridicule, insults and insensitivity?

As a parent all I want is for my daughter to be a productive tax paying member of society, to enable this to happen means early intervention, proactive rather than reactive medical care and support.
commented 2015-01-16 18:36:37 +0000
Thank you for helping the NF1 community in highlighting the appalling lack of awareness (particularly among heath professionals) and funding for this condition.

We’ve had enough of platitudes like those given by Health Minister Earl Howe on how brave those with NF1 are. Why should anyone have to feel brave to just go about their daily business without fear of ridicule, insults and insensitivity?

As a parent all I want is for my daughter to be a productive tax paying member of society, to enable this to happen means early intervention, proactive rather than reactive medical care and support.

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