19 Mar 09. Brain Tumour UK, the specialist brain tumour charity, has launched an awareness campaign regarding the registration of all brain tumours in the UK.
They say – Recording every brain tumour is the first step towards acknowledging that a significant number of people, facing real personal challenges, are in need of the care of the National Health Service.
But Brain Tumour UK believes that around 8,100 patients with primary brain tumours are left off the UK’s official statistics every year. And an uncertain number of metastatic (secondary) brain tumour cases – perhaps as many as 32,000 – are also not recorded in detail.
In a world driven by information technology, it is impossible to plan and deliver care for this vulnerable group of people when they are “missing” from the healthcare system. Brain Tumour UK wants every brain tumour to be recorded and is today launching a campaign to encourage governments and health services across the UK to add those thousands of missing brain tumour patients to the UK’s official statistics.
Why aren’t all brain tumours recorded?
- Only malignant tumours are regularly recorded. Patients with benign and potentially malignant tumours who also need access to acute cancer services are not recorded. In England and Wales, official guidance[13] on recording brain tumours, from the Cancer Action Team, states:
4.39 Which grades of brain tumour do we report for cancer waiting times?
Grade 3 and 4 tumours are considered malignant and should be reported for cancer waits.
Grade 1 and 2 tumours are benign and so should not be recorded for cancer waits.
This narrow focus on malignant tumours encourages the under-recording of low grade and benign tumours. A similar problem exists in Northern Ireland and Scotland.
- The surgery required to obtain a sample for pathology can be impossible, due to the type and location of the tumour. With benign tumours, open-skull surgery to obtain a sample may not be justified. In the case of malignant tumours, surgery may simply be too risky for the patient. In the absence of pathology, brain tumour records are often not added to the Cancer Registry. Pobereskin[1] has found that two thirds of brain tumour patients who did not have surgery were not recorded on the Cancer Registry.
- Even patients who undergo surgery may not be recorded. The lack of a clear standard for recording brain tumours means that these patients may not be entered onto the Registry. Pobereskin[1] found that one third of patients who had undergone surgery were not on the Registry.
- Thousands of secondary (metastatic) brain tumours are not recorded in the Cancer Registry because the brain tumour is secondary to the primary cancer.
Julian Nettlefold of The Family Practice Press said, “The United Kingdom Family Court process is equally to blame for the lack of registration and knowledge of brain tumours. We know of many cases where there is clear medical evidence of the existence of brain tumours produced in Court right up to positive EEG recordings with the accompanying personality changes and violent tendencies of some people. None of these are registered.”
“Not only is there no requirement for Family Lawyers to have training in such matters, the evidence is routinely left out of the Court Bundle and the existence of the personality change which is the first sign of a brain tumour, put down to ‘family dynamics.’ In the majority of cases this results in the father being forced from the family home leaving the brain tumour sufferer (women are three times more likely to have a meningioma) with no treatment, no registration of the problem and free to abuse the next target of his or her anger – the children. We know of one case where and untrained, unqualified clerk working in such a case told the Court that there was no medical evidence available to prove any problem in the mother in spite of two positive EEG tests and a clear psychiatric history of violence. This allowed the mother to be left with the child then 18 months old. It took that child when aged eight to make a statement of Abuse to the Police and another seven years to give him a safe refuge. On every occasion the father expressed concern for his child, the Court checked the bundle to find that the lawyers had given the mother the all clear, and thus, the father was deemed to be unhinged and encouraging the statements from the child. The specialist who handled the tests on the mother expressed incredulity that he had not been contacted. The Law Society Children Panel took no action against the firm in spite of a clear breach of its Rules.”
“In the Appeal, the Judge said that ‘There was no causal link between the firm’s negligence and the abuse towards the child. That will be challenged in due course. Of course there was – there was clear evidence of a long history of violence by the mother against members of her family, attacks against the father and the child when the family were together with accompanying positive brain EEG tests.”
For further information contact:
Julian Nettlefold, Family Practice Press: (M) 077689 54766
E:
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