Health: Neurofibromatosis Type 1

Lord Bassam of Brighton Excerpts

Tuesday 13th January 2015 Grand Committee

[Lord Bassam of Brighton (Lab)]

My Lords, I promised recently when I spoke in a debate on House procedures that I would not, as Labour Chief Whip, make a habit of speaking, so I owe noble Lords an apology for this reappearance so soon. I am looking over there at “The Judgment of Daniel” with a finger pointing in my direction and I am becoming worried.

However, I make no apology for speaking out on this issue and I am sad, if unsurprised, that the debate has attracted so few here today, although this rather makes a point. Few people know of the neurofibromatosis type 1 condition and, I suspect, even fewer know of its debilitating effect on individuals with the condition and on their families. I confess that I was largely unaware of the condition and its impact until early last year when I, by chance, read an article reviewing the film “Under the Skin”, starring Scarlett Johansson and a young NF1 sufferer, Adam Pearson, who plays a major role in that film. Shortly after watching it, I met Nicole Martin, who has NF1, and her mother Vanessa. Talking to them, I learnt more about the condition and the issues it gives rise to. I decided that Nicole and Vanessa were heroes for the way in which they had tried to raise awareness of NF1. It was then that my noble friend Lord Hunt, to whom I am extraordinarily grateful for calling this debate, and I decided to try to help in their work.

NF1 is the least known but most common genetic condition. It is estimated that across Britain there are some 25,000 sufferers who can be identified at birth, but for whom there is no cure. One NF1 child is born every day, and one in 2,500 children is born with the condition. Each has a 50% chance of passing it on to each of their own children.

The problem with the lack of awareness is that it leads to a lack of understanding from health, education and public service professionals—the very people who need to know how to respond to those needing help and support. Vanessa Martin explained to me that, while the signs were present from birth, diagnosis was not made until Nicole was three years old. In another case, a Reading parent, Nicky Clifford, told me that her son was not diagnosed until he was eight. By that age, most of the disadvantages that my noble friend referred to and NF1 sufferers confront have already become entrenched. However, many more people are not diagnosed until they are in their 30s or become parents themselves, having unwittingly passed the condition on. At that point, parent and child are often diagnosed at the same time.

NF1 manifests itself in different ways. Basically, tumours grow on the nerves inside the body and on the skin. This 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 also unpredictable—it mutates and changes all the time. Just this morning, I heard that over the past weekend a number of new and painful tumours had grown quickly on Nicky Clifford’s son’s head. His mother of course is now desperate to get an emergency appointment with a paediatrician and an MRI referral.

In the case of Nicole Martin, now 17, she has done remarkable things with her life. Until quite recently, Nicole had hoped to represent the UK in judo at the Special Olympics and, despite lengthy periods of hospitalisation, is doing astoundingly well at her sixth-form college and plans to go on to higher education.

But why is she doing so well? It is largely because both she and her mother are very determined people. Nicole was referred to a specialist NF1 centre in Manchester, to which my noble friend referred. This led to a further referral to Oxford and the removal of tumours. She has now moved from facing the prospect of a life in a wheelchair and living with adaptations to walking unaided and with lower levels of pain relief and management. Now she is looking forward to obtaining a degree and seeking employment—something everybody aspires to for their children.

Nicole’s story is indeed inspiring. However, it has been a constant struggle, and the lessons of that struggle seem clear to me. We need to raise awareness in the medical profession to ensure early diagnosis. The café-au-lait, or CAL, examination at birth should be standard and a record made of that test. A follow-up procedure should be put in place and referrals made when and where appropriate. Further CAL checks need to be made throughout a child’s early years. As I understand it, there is currently no such imperative for any recording. The training of medical staff obviously needs to be part of the approach, so that following early diagnosis, support and referrals can be put in place.

I hope that the Minister can this evening confirm that a national strategy is being developed to assist NF1 sufferers. Other specialist conditions such as cystic fibrosis, with approximately 10,000 sufferers in the UK, and motor neurone disease, with around 5,000 people affected at any one time, seem to attract more interest in terms of research, support, specialist advice and training development. I do not think it right to argue one condition against the needs of another, but what the National Health Service might need to do is ensure that conditions that are not widely understood are part of a broader strategy so that sufferers and their families do not feel ignored or left out of care planning.

As very determined parents of NF1 sufferers, Nicky Clifford and Vanessa Martin have usefully found advocates in Vicky Groulef, in Reading, and Sarah Owen, in Hastings and Rye. In itself that is good, but this condition and others should not have to rely on the caring interest of aspiring parliamentarians, which is what they are.

Finally, I make a plea to the Minister. He will be pleased that I am asking not for the release of new or additional resources but for a review of how support is given by the NHS to the organisations that help parents and sufferers of this common but little-recognised condition. This will enable us to be assured that the vital networks that are there to help are properly and effectively nurtured and that the treatment, care and compassion that the NHS is renowned for are unlocked.