HM Government.

HM Government

Petition to:

Help keep sophie atays legacy and do more to help familys with neuroblastoma

This petition is now closed, as its deadline has passed.

We the undersigned petition the Prime Minister to Help keep sophie atays legacy and do more to help familys with neuroblastoma. More details

Submitted by Jade Emson – Deadline to sign up by: 06 June 2010 – Signatures: 658

More details from petition creator

Poor Sophie Atay died 11th march of neuroblastoma, This is a awful thing and effects young children, Sophie's mum Karine had to appeal to the country to raise money to try to get sophie the treatment she needed, No family suffering this should have to do this, its a long battle and with treatment not as developed in uk as in america, familys have to look for that extensive treatment in america, Sophie battled since 15month's old and as many as 100 familys in the uk a year are diagnosed with this crippling aggresive cancer. we are asking for a change so less family's have to go through this pain and suffering, help with earlier diagnosis is key.. mothers should be taught of all the signs to aid in early detection , so it would cut down on death rates, information packs about chilhood cancers need to be givenout to all new parents. Treatment and funding should be available to get the kids the treatment they need asap. Our angel Sophie has gone but this will be her legacy.

Government response

The Government seeks to improve the survival rates for all cancer patients, including children.  It is committed to measuring its success on the results that really matter, such as improving cancer survival rates.

On 6 July, the Government announced a review of the Cancer Reform Strategy (CRS).  Significant progress has been made on cancer since the publication of the Calman-Hine report in 1995.  Cancer survival rates in England have been steadily improving, but further improvements need to be made.  It is now generally agreed that the most prevalent reasons for lower survival rates in England compared with other European countries are low public awareness of the signs and symptoms of cancer, delays in people presenting to their doctors, and patients having more advanced disease at diagnosis. 

The Department of Health will be looking carefully at how best to improve public awareness of cancer symptoms and it has asked Professor Mike Richards, the National Cancer Director, to review the CRS to ensure that it has the right strategy, subject to the Spending Review, to deliver improved survival rates.  In addition to focusing on outcomes, the review will set the future direction for cancer services. 

Improving outcomes for children and young people with cancer was published by the National Institute for Health and Clinical Excellence (NICE) in 2005.  The guidance serves to assist NHS Trusts with planning, commissioning and organising service for children and young people with cancer.  It recommends the establishment of specific education for professionals in primary and secondary care in the recognition and referral of suspected cancer in children and young people.

To support the implementation of the NICE guidance, the Children and Young People’s cancer advisory group was formed, co-chaired by Professor Richards and Dr Sheila Shribman, the National Clinical Director for Children, Young People and Maternity Services.
Action is being taken across the NHS to ensure that the recommendations of the NICE Guidance are fully implemented by 2011.  Later this year, it is planned that measures will be developed to help the NHS review and assess the services they provide to ensure that they offer the best services for young people, in line with the NICE guidance.

On the issue of treatment, the Government will also reform the way that drug companies are paid for NHS medicines, moving to a system of value-based pricing at the end of 2013, when the current Pharmaceutical Price Regulation Scheme expires.  This will help ensure better access for patients to effective drugs and innovative treatments on the NHS and secure value for money for NHS spending on medicines.

As an interim measure, the Department is creating a new Cancer Drugs Fund, which will operate from April 2011 and will help patients get the cancer drugs their doctors recommend.  The Department has worked hard to prioritise budgets in 2010/11 so that it can bring forward funding to improve access to cancer treatments, ahead of the introduction of the Cancer Drugs Fund.  On 27 July, the Government announced that, from October 2010, an additional £50million will be made available to pay for cancer drugs.