Lord Steve Bassam speech to House of Lords on diagnosis and treatment of

NF Type 1

House of Lords, Grand Committee debate

Tuesday 13th January 2015

I promised recently when I spoke to a debate on House procedures that I

wouldnt make a habit as Chief Whip of speaking so I owe Noble Lords an
apology for this reappearance so soon.

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 NF Type 1 condition and, I
suspect, even fewer know of its debilitating impact on individuals with the
condition and their families. I confess that I was largely unaware of the
condition and its impact until early last year when I read an article reviewing
the film Under The Skin starring Scarlet Johannsen and a young NF1 sufferer
Adam Pearson who plays a key role.

Shortly after watching the film, I met Nicole Martin who has NF Type 1 and her
mother Vanessa. Talking to them I learned more about the condition and the
issues it gives rise too. I decided that Nicole and Vanessa were heroes for the
way they had tried to raise awareness of NF1. It was then that Lord Hunt who
I congratulate for calling this debate and I decided to try and help in their
work.

NF Type 1 is the least known of but most common genetic condition. It is

estimated that 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 1 in 2,500
children are born with the condition. Every one of them has a 50% chance of
passing it onto 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 whilst the signs were present
from birth diagnosis wasnt made until Nicole was three years old. In another
case of a Reading parent, Nicky Clifford, her son wasnt diagnosed until he was
eight.

By that age, most of the disadvantages that NF1 sufferers confront have
already become entrenched. Many more people however, are not diagnosed
until their 30's or they become parents themselves, having unknowingly
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 Cliffords sons 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, she is now 17 and 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
well at her Sixth Form College and plans to go onto higher education.

But why is she doing so well? Largely because both she and her mother are
very determined people. Nicole was referred to a specialist NF1 centre in
Manchester. 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 wheel chair
and living with adaptations, to walking unaided and with lower levels of pain
relief. Now she is looking forward to obtaining a degree and seeking
employment.

Nicoles story is inspiring. However it has been a constant struggle and the
lessons of that struggle are clear to me.

We need to raise awareness in the medical profession to ensure early

diagnosis. The caf au lait (CAL) examination at birth should be standard and a
record made of them. A follow up procedure should be put in place and
referrals made when appropriate. Further CAL checks need to be made
throughout a childs early years. As I understand, there is currently no such
imperative for recording. Training of medical staff obviously needs to be part
of the approach, so that following diagnosis, support and referrals can be put
in place.

I am hoping 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 (approximately 10,000 sufferers in the UK) and Motor Neurone
Disease (with around 5,000 affected at any one time) seem to attract more
interest in terms of research, support, specialist advice and training
development. I dont think it right to argue one condition against the needs of
another, but what the NHS might need to do is ensure that conditions not
widely understood need to be 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 through Vicky Groulef (in Reading) and
Sarah Owen (in Hastings & Rye). In itself that is good, but this condition and
others shouldnt have to rely on the caring interest of aspiring
parliamentarians.

Finally a plea to the minister. He will be pleased that I am not asking for the
release of new or even additional resources but 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 the treatment, care and compassion that the NHS is reknowned for
unlocked.

ENDS