Let’s fight this horrible disease together

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 it 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 – 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 to 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 Steve Bassam of Brighton,

Opposition Chief Whip in the House of Lords

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