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Tomlinsons make drug review call Tomlinsons make drug review call
(about 4 hours later)
Fund-raiser Jane Tomlinson's family and the NHS trust that treated her have called for a review of the availability of advanced trial drugs. Fund-raiser Jane Tomlinson's husband and the NHS trust that treated her have called for a review of the availability of advanced trial drugs.
Mrs Tomlinson's husband Mike said she found it "distressing" that she could not get access to Lapatinib, when it was available elsewhere in the UK.Mrs Tomlinson's husband Mike said she found it "distressing" that she could not get access to Lapatinib, when it was available elsewhere in the UK.
She had to make a 150-mile round trip to Nottingham to get the drug.
Along with the Leeds Teaching Hospitals NHS Trust, he has asked the government to stop it happening to other patients.Along with the Leeds Teaching Hospitals NHS Trust, he has asked the government to stop it happening to other patients.
Potential life expectancy should not depend on the location where the person resides Mike Tomlinson
Mrs Tomlinson died in September, aged 43, after a seven-year cancer battle.Mrs Tomlinson died in September, aged 43, after a seven-year cancer battle.
Mr Tomlinson said his wife's medical team in Leeds decided Lapatinib was her best option. While terminally ill, she raised more than £1.75 million for charity by running in three London Marathons, several triathlons and The Great North Run.
'Caused distress' Mr Tomlinson said his wife's medical team in Leeds decided Lapatinib was her best option. It costs £6,700 per patient, per year.
However, Leeds Teaching Hospitals NHS Trust had taken the decision not to participate in a GlaxoSmithKline-sponsored access study of the treatment.However, Leeds Teaching Hospitals NHS Trust had taken the decision not to participate in a GlaxoSmithKline-sponsored access study of the treatment.
He told reporters: "Clearly it was quite distressing for Jane to find that she would no longer be able to have the treatment that everyone thought would be most suitable for her. 'Extremely cross'
He said: "Clearly it was quite distressing for Jane to find that she would no longer be able to have the treatment that everyone thought would be most suitable for her.
"It caused a lot of distress to her and a lot of upset.""It caused a lot of distress to her and a lot of upset."
Mr Tomlinson said further approaches were made to the drug company itself and to the NHS in Nottingham, where she was eventually accepted on to the trial in April.Mr Tomlinson said further approaches were made to the drug company itself and to the NHS in Nottingham, where she was eventually accepted on to the trial in April.
He added: "During those three months Jane suffered a severe decline in health and certainly by the end of March she felt that she was almost at the end of her life. However, he said the delay in getting on to the trial in Nottingham severely affected her health.
"There was no doubt in our minds that delay and inability to get treatment had a long-term impact on Jane's health at that time. "There was no doubt in our minds that delay and inability to get treatment had a long-term impact on Jane's health at that time," he said.
'Extremely cross' "This is the National Health Service. Potential life expectancy should not depend on the location where the person resides.
"Clearly... we were raising money for the hospital at the same time as Jane's options were being limited. "She was extremely cross that there were inconsistencies across the health service which allowed some patients treatment and some patients not treatment."
"We made a conscious decision to continue supporting the Yorkshire Cancer Centre and the Trust because we felt not doing so would be petulant and wrong. 'Deeply disappointed'
"Our aim was to try and help those people who were suffering like Jane." Mr Tomlinson said his wife had asked him to speak out after her death.
Mr Tomlinson said his wife was extremely proud to have worked for the trust and said it had her "unflinching support" as an employee. Mrs Tomlinson worked as a radiographer. Mr Tomlinson said making his wife travel to Nottingham for treatment was "inhumane" and "caused unnecessary aggravation to Jane at a time when she was at her most vulnerable".
However, he added: "She was extremely cross that there were inconsistencies across the health service which allowed some patients treatment and some patients not treatment." He said: "Jane has been fundamentally let down by an unjust system. She has received many tributes over the last month. The most fitting would be the resolving of this issue."
While terminally-ill, Mrs Tomlinson raised more than £1.75 million for charity by running in three London Marathons, several triathlons and The Great North Run. Dr Phil Ayres, deputy medical director of the Leeds Teaching Hospitals NHS Trust, said: "We were deeply disappointed not to be able to offer Jane the treatment she and her consultant wanted.
"We support Jane and Mike's views that we need a debate about access to drugs that have not yet been licensed or nationally approved.
"It is currently a difficult and uncertain process to make investigational drugs appropriately available."