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DELEGATED LEGISLATION
Mr. Deputy Speaker (Sir Alan Haselhurst): With permission, I shall put together the motions relating to delegated legislation.
Motion made, and Question put forthwith, pursuant to Standing Order No. 118(6)(Standing Committees on Delegated Legislation),
That the draft Sexual Offences Act 2003 (Travel Notification Requirements) Regulations 2004, which were laid before this House on 25th March, be approved.
That the draft Criminal Justice Act 1988 (Offensive Weapons) (Amendment) Order 2004, which was laid before this House on 15th March, be approved.
That the draft Merchant Shipping (Convention on Limitation of Liability for Maritime Claims) (Amendment) Order 2004, which was laid before this House on 24th March, be approved.
That the Local Government Finance (England) Limitation of Council Tax and Precepts (Alternative Notional Amounts) Report (England) 2004–05, which was laid before this House on 25th March, be approved.
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That the draft European Parliamentary Elections (Northern Ireland) Regulations 2004, which were laid before this House on 18th March, be approved.
That the Value Added Tax (Buildings and Land) Order 2004 (S.I., 2004, No. 778), dated 17th March 2004, a copy of which was laid before this House on 17th March 2004, be approved.—[Joan Ryan.]
Question agreed to.
EUROPEAN COMMUNITY DOCUMENTS
Motion made, and Question put forthwith, pursuant to Standing Order No. 119(9)(European Standing Committees),
That this House takes note of European Union Document No. 10243/03, Commission Communication: Towards more accessible, equitable and managed asylum systems; welcomes the Commission's endorsement of the United Kingdom's analysis of the problem; and notes that this is only an interim discussion paper pending the submission by the Commission of a more substantive report by June 2004.—[Joan Ryan.]
Question agreed to.
ADJOURNMENT (MAY)
Ordered,
That this House, at its rising on Friday 30th April, do adjourn till Tuesday 4th May 2004.—[Joan Ryan.]
EUROPEAN SCRUTINY
Ordered,
That Tony Cunningham and Mr. Colin Breed be discharged from the European Scrutiny Committee and Sandra Osborne and Nick Harvey be added. .—[Joan Ryan.]
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Brain Tumours (Children)
Motion made, and Question proposed, That this House do now adjourn.—[Joan Ryan.]
9.21 pm
Mr. John Bercow (Buckingham) (Con): There can surely be few more tragic or heartbreaking experiences than for a parent to discover that his or her child has a brain tumour. As the Under-Secretary will doubtless be aware, 16,000 people a year are diagnosed with brain tumours. Of those, no fewer than 350 are children. About 100 children die each year as a result of a brain tumour. Furthermore, the prognosis for children so diagnosed is poor, with only 20 per cent. surviving beyond five years. Research now shows that brain tumours have overtaken leukaemia as the biggest killer of children under the age of 15.
In the year 2000, six children aged under five from my own county of Buckinghamshire were diagnosed with brain tumours. Without wishing to induce in right hon. and Members statistical fatigue, it needs to be understood that the phenomenon is neither simple to detect nor uniform in type. Rather there are more than 120 different types of brain tumours, which present themselves in a variety of ways.
I put it to the House that the issue of children with brain tumours is under- debated, under-reported and underfunded. In this Parliament, the issue has attracted minimal—dare I say it, derisory—attention. There has been not one Adjournment debate until now, not one oral parliamentary question, and only two written parliamentary questions, tabled by my hon. Friends the Members for Ribble Valley (Mr. Evans) and for West Chelmsford (Mr. Burns). However, there is early-day motion 737, which commends—and rightly so—the BBC online reporter Mr. Ivan Noble for his personal and moving website diary of the diagnosis and treatment of a malignant brain tumour. That motion has so far attracted no fewer than 28 signatures.
While the media have justifiably devoted coverage to other cancers, they have seemingly overlooked the plight of children diagnosed with brain tumours, giving scant coverage to that plight. The apparent low incidence of this type of cancer, by comparison with other forms, has caused the brain tumour community to be poorly supported and funded.
A score of charities, through a plethora of fund-raising methods, finance research to help child sufferers. Most of them are small, dependent on volunteers and in limited or no contact with each other.
At the other end of the spectrum, Cancer Research UK is the largest supporter of the UK children's cancer study group, an organisation that treats all children with cancer, ensuring that they receive the most up-to-date treatment. For example, the point has been made to me that many children with brain tumours are given chemotherapy to keep their tumours under control until they are old enough safely to receive radiotherapy. Yet coverage—this is the gravamen of the argument—is not comprehensive, and because the change is recent, its full impact remains unknown.
In short, there is no ground whatsoever for complacency. In any case, charitable effort can only ever be a supplement to, not a substitute for, public financial
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support. That support is needed, needed on a substantial scale, and needed now. All the charities, countless individual campaigners and many tumour victims could deservedly be mentioned. Time prevents me from doing so. Instead, I shall tell the House candidly that my motivation for seeking this debate was an approach in January from a constituent, Sue Farrington-Smith, a woman of intelligence, courage and unflinching resolution to tackle the horror of brain tumours in general and among children in particular.
Sue's sister, Julie Phelan, had a daughter, Alison, who died on 7 June 2001, just three weeks before her eighth birthday. After noticing that Alison had developed a squint in her eye, Julie Phelan became concerned that her daughter was unwell. She had two appointments with her general practitioner. The GP referred Alison to an optician. The optician said that the squint was common and that it would correct itself. Julie and her husband, Gary, felt that something was wrong. They went back to the doctor. They then went to another optician. They appealed for someone to listen to them. Julie eventually went to a third optician. That optician advised Julie to take her daughter to accident and emergency with a letter detailing the fact that something was making the muscles in Alison's eye deteriorate. The hospital staff referred the family to a leading eye hospital. The advice was that there was no reason to worry. After a further visit to doctors and a children's hospital unit, Alison's parents were again told not to worry. Eventually, following test after test after test, a visit to hospital led to a scan and a meeting with a specialist and a verdict:
"There is nothing we can do. The tumour is untreatable."
That is a summarised version of a human tragedy that no words can adequately describe. Alison underwent intensive radiotherapy, but she suffered a haemorrhage into the tumour and died eight weeks later—10 months after the tumour was first diagnosed. Following her death, appalled by the lack of research funding and horrified that a cure might not be found for years, Alison's family and friends set up the charity Ali's Dream with the objective of raising funds for research into childhood brain tumours, to discover their causes, advance treatments and find a cure.
UK brain tumour charities are striving for increased funding to improve education, information, specialisation, support and research. I deal first with education. General practitioners and other health professionals need information to be widely available, and they need also to receive training in order to identify the differing symptoms of the various tumours. Often, GPs either do not recognise the symptoms or choose to eliminate other causes first. The reality, of course, is that there is a multiplicity of symptoms. Part of the problem is that those symptoms are the same as those for other illnesses and diseases.
They include headaches, convulsions, vomiting, nausea, subtle changes in personality or mental ability, blurred or double vision, muscle weakness, stumbling, lack of co-ordination, slurred speech, problems with smelling and hearing, and the inability of eyes to gaze upwards. In the circumstances, a screening programme for individuals who present with such symptoms should be more readily available so that treatment can start earlier rather than later—or sadly, as in many cases at present, too late.
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Secondly, I turn to the issue of information. The empirical evidence that I have adduced thus far testifies that a reliable and up-to-date source of information is necessary, because there is no central repository of information on this cancer, leaving patients, carers and families having to hunt for knowledge. The options and the treatments available should be fully explained, and in layman's terms. For example, if surgery is proposed, what is available? What drugs are available? Better information is also needed on what support—financial, physical and emotional—is available, on the NHS or privately through charities, because that is a vital lifeline in such circumstances.
Thirdly, I turn to the issue of specialisation. In the UK at present, there are only 17 locations with the facilities to treat brain tumour patients. Eight of the children's cancer hospitals do not have the facilities to treat brain tumour patients. Each hospital that treats brain tumour patients should have a multidisciplinary team, including speech therapists, occupational therapists, physiotherapists, epilepsy nurses, nutritionists, social workers, neurologists, oncologists, neurosurgeons and neuro-oncology nurse specialists. Specialised therapy equipment should also be available both in hospitals and at home. Specialised counselling, night-sitters and respite care are also necessary. That is the essential infrastructure without which the lives of those who seek to cope in such circumstances become unimaginably grim and awful.
Support in its widest sense is also invaluable. Hospitals should provide facilities for families that include overnight facilities, rest rooms and showers. Families who are bereaved should have freely available professional counselling. Funding is desperately needed for families who have to travel to receive treatment and to pay for accommodation. No hon. Member should work on the assumption, consciously or unconsciously, that such costs are insignificant and can be readily borne. That is often simply not true. Additional money is also needed for hidden costs, such as parental leave, new clothes for children on steroids whose clothes no longer fit, and treating patients and siblings to special holidays to ease the pain.
Research, research and research must be of the essence. Dedicated laboratory-based research on brain tumours is carried out at only 10 centres nation wide and clinical trials are undertaken in only eight hospitals—half the total number of brain tumour hospitals in the UK. An integrated research programme and dedicated brain tumour research centres are required, focusing on types of tumour, genetics and molecular genetics, brain tumour invasion and the effectiveness of treatment.
It is glaringly obvious that this country still has high hurdles to overcome if the scourge of brain tumours is to be successfully fought. I say that the hurdles are high, but—with effort, skill and focus—they should not be insurmountable.
Medical science continues to advance, to create new cures and, inevitably, to produce new lists of expectant patients in the process. Yet the research that leads to treatment, that can provide relief and offers the ultimate prospect of a cure demands political will and financial support.
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Members of all political parties and of none, and parents, patients and professionals, look to the Government to give a lead and to make the fight against brain tumours a key priority. I look forward to the contributions that other hon. Members will doubtless make to the debate. I look forward, in particular, with interest, courtesy and respect to the response of the Minister and to the policy of the Government. I think that I can confidently say that tens of thousands across the country will do so too.
9.35 pm
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