BIVDA’s second parliamentary conference saw a number of charities speak their mind to the movers and shakers of diagnostic healthcare.
Tom Pleasant reports (MLW January 2003)
The British In Vitro Diagnostics Association (BIVDA) organised a parliamentary conference in London recently entitled Children’s Health - Diagnostics in the 21st Century. Held at the House of Commons, the half-day event saw speakers from five major charities discuss the issue before of a cross- section of delegates from politics, medicine and industry.
It was hosted by Dr Ian Gibson MP, who is also chairman of the Commons Select Committee on Science and Technology, with John Menzies, chairman of BIVDA, as conference chairman.
After Dr Gibson opened the proceedings, Paul Weinberger of Roche Diagnostics and member of the BIVDA executive committee began the day. Slightly the worse for wear from an early morning flight he still managed a joke or two and warmed the assemblage by discussing how important diagnostics in healthcare is and yet how often it is overlooked.
He spoke of how past and existing attitudes to pathology were of a backroom (or even a cellar or portacabin) add-on to healthcare. Current NHS expenditure on pathology is a meagre 0.5% of its total compared to 12% spent on drugs. Other European countries, meanwhile, spend up to three times more than Britain.
As an example of how diagnostics could be modernised to encourage more patient responsibility, Weinberger referred to the diabetes control and complication trial of 1993. This showed how specific daily adjustments of insulin dosage by patients could add on 7.7 years of sight, 5.8 years free from significant kidney problems and 5.6 years free from amputation. Aside from the amount of workload and money saved (10% of NHS expenditure goes towards diabetes) it would add immeasurably to diabetics’ quality of life, a sentiment that was stressed throughout the day. The fact that this study is almost ten years old suggests that we are seriously lagging in our ability to accommodate innovation.
Lesley Green from Children Living with Metabolic Diseases underlined the importance of newborn screening and how an early diagnosis can maximise the benefits from treatment. The major issues to be tackled are the patient’s quality of life and the knock-on effect for the parents, family and society.
Green pointed out that, although treatment from doctors and GPs helps reduce the primary symptoms, without correct diagnosis the problem will only return with a vengeance later on. Her main complaint is that many in the NHS see conditions that are not widespread as being minor concerns, whereas, in reality, they may have a pervasive effect on financial and emotional well-being of the patient.
Marvelle Brown from the Sickle Cell Society told how poorly educated carriers of the disease who, with large families, believe that one child out of four will have the disease not that each child has a one in four chance of having it. This can result in families of 12 who all have full- blown sickle cell anaemia and cannot understand why.
Dr Peter Howarth of Allergy UK cheerfully regaled the discomforts of hay fever to the non-sufferers in the audience, commenting on how it’s often overlooked outside of television advertisements and the health pages of lifestyle magazines. In 1926 0.5% of people had hay fever. In 1999 the figure had risen to 25% and is set to increase. With over 800,000 workdays missed a year from hay fever alone — costing in the region of £850 million — you could be forgiven for thinking that such a prevalent condition would be better researched. In fact only seven allergy centres exist in the UK and all but one are in London.
Catherine Arkley from the Children’s Liver Disease Foundation talked of GPs reticence to check for liver disease. Because 98% of newborns are jaundiced in the first two weeks of life, doctors assume, quite rightly, that the chances of it clearing up on its own are good. And yet when this is not the case, infants are suffering unnecessary liver damage and many do not recover without a £40,000 transplant (if they can get one in time). Follow-up treatment costs around £4,000 per annum.
Arkley also talked of the ‘hidden epidemic’ of Hepatitis C. An estimated 250,000 people are undiagnosed carriers of this disease and 80% can become infective. Arkley made the strength of her views clear by voicing the opinion that, to the NHS: “a dead patient is a cheap patient”.
Rosie Barnes of the Cystic Fibrosis Trust told delegates that only one trust in West Lothian checks for potential carrier status of would-be parents, after which Clem Fitzgerald, BIVDA chairman elect, closed the session. He spoke of the importance of pre-emptive and predictive tests that would not only save the NHS time and money but also, as had been stressed throughout, improve patients’ quality of life. |