Comment: My constituent’s cancer battle highlights PCT injustice

The story of my brave constituent's battle with cancer shows the inconsistency of Primary Care Trusts.

By Neil Parish MP

Neuroblastoma is an incredibly rare solid tumour cancer that tragically occurs in very young children and infants, primarily under the age of 5 years. Only one hundred children are diagnosed with neuroblastoma each year in the UK. This is a blessing in itself but of little comfort to those parents coping with the emotional strain of knowing that their child must face the long, hard battle against cancer.

It develops from the tissues that form the sympathetic nervous system. Most neuroblastomas begin in the abdomen in the adrenal gland or next to the spinal cord, or in the chest. Neuroblastomas can spread to bone marrow, liver and lymph nodes. It is a particularly hard cancer to treat as the tumour can metastasise; rapidly spreading to other parts of the body.

It saddens me then that a young constituent of mine is being denied funding by his local Primary Care Trust to receive vital treatment in Germany that might well be curative.

Sam was diagnosed with neuroblastoma at 16 years old in July 2008, whilst undertaking his GCSEs at school. Sam went through 8 hours of surgery, gruelling high dose chemotherapy, a stem cell transplant and radiotherapy. Sam responded well to his treatment and excelled at school achieving high grades in every subject going on to continue his studies at sixth form.

Sadly, Sam became ill again in October 2010 and the family was informed that the neuroblastoma had come back. After Sam completed six further courses of chemotherapy and another stem cell transplant a new treatment was added to the frontline protocol in the UK for all new children diagnosed.

This new treatment is called anti-GD2 monoclonal antibody treatment. It is a targeted cancer therapy that uses antibodies to inhibit the growth of cancer cells by binding the receptor on these cancer cells. In this case the antibodies bind to a protein called GD2 on the surface of neuroblastoma cells.

There is now wide clinical agreement that all children with high risk neuroblastoma who might benefit should have access to monoclonal antibody treatment as it significantly increases the chances of survival.

However, this clinical trial being led by Dr Penelope Brock from Great Ormond Street Hospital is not currently available in this country for relapsed cases, only for newly diagnosed cases. A second trial is being established with wider eligibility criteria that would include those children like Sam who have relapsed, however this will not available until January 2012.

This is an unworkable timeframe for neuroblastoma sufferers and because of this some parents have opted to have the treatment in Germany, which is currently piloting the new trial that will be available across England in 2012, paid for by their local Primary Care Trust after an Individual Funding Request. But the Dorset primary care trust near my constituency does not do so at the moment. At the moment Sam's family is trying to raise funds to pay for the 80,000 euro that this treatment in Germany costs and have already re-mortgaged their house.

This is in direct contrast to the decision made by NHS Northamptonshire's Individual Funding Request Department in an almost identical case. A young boy who, like Sam, was not eligible for the clinical trial was offered funding for monoclonal antibody treatment in Germany. In their letter to the family, the Individual Funding Request Department made clear that:

"Given the timescales involved NHS Northamptonshire does not wish further obstacles to stand in the way of treatment and we have agreed that if necessary the cost of monoclonal antibody treatment in Germany would be covered by NHS Northamptonshire."

This raises the question of how two Primary Care Trusts could come to two completely different conclusions. I really think that people should be treated fairly throughout the country. We do not want a postcode lottery of who gets funding for treatment of rare cancers.

Neil Parish was elected as the Conservative MP for Tiverton and Honiton in 2010.

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