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Prime Minister 'moved' by Abi's letter pleading for life-saving drug

Credit: Cavendish Press

The Prime Minister was moved by Abigael's letter and her bravery in the face of what is clearly a very difficult condition. It is absolutely right that children and their parents should ask for the very best from our NHS and the Prime Minister has asked NHS-England to urgently contact Abigael and her family to ensure they are absolutely clear on the clinical reasons for their decision. These decisions are rightly taken by clinical experts based on the best available evidence about the potential benefits of a particular treatment or drug. It is important those doctors look at the fullest possible evidence for drugs like Eculizumab and so the Prime Minister has asked both NHS England and the National Institute for Health and Care Excellence (NICE) to further look at the guidance and procedures applied in Abigael’s case.

– Spokesperson for the Prime Minister

12-year-old fights NHS red tape for medication which could save her life

12-year-old Abi Longfellow's life changed two years ago when a trip to A&E for a lingering throat infection revealed she was actually suffering from kidney failure.

Abi Longfellow has been battling the illness for two years

Abi was admitted to Pinderfields and I slept with her there that evening. 24hrs hours later she was transferred by ambulance to the paediatric renal ward at the Leeds General Infirmary. Abi underwent a number of treatments in an attempt to save her kidneys. High doses of steroids and cyclophosphamide (chemotherapy) had little effect. A visit to theatre to fit a line into her chest to carry out multiple sessions of plasma exchange left her immunity stripped and Abi in an isolated room on the ward for her own protection. Her skin thinned, stretch marks appeared, her hair began to fall out and her body continued to swell with fluid. Sadly the treatments had no success. A kidney biopsy finally confirmed Abi had Dense Deposit Disease, a rare but aggressive kidney disease.

– Jo Longfellow, Abi's mother

Abi now spends 10 hours a day on dialysis but doctors are not able to give her the drug which could save her life because her illness Dense Deposit Disease is too rare to be covered by the NHS England funding policy. At the same time it is not considered to be rare enough to be classed as an exceptional case which would allow her access to the drugs she needs.

Her family is campaigning for her to be allowed the drug. Abi has even written to the Prime Minister asking him to intervene.

Why is that fair when other children with other rare kidney diseases like me are receiving it? I’m a 12-year old English girl and if I lived in Ireland, Europe, America, Canada etc I would get the medicine without hesitation.

So I want to know why am I being disadvantaged in my own country?

– Abi Longfellow's letter to David Cameron
Abi's letter to the Prime Minister

These are incredibly difficult situations, but in this case doctors and medical experts decided that it would not be right to fund a treatment that hasn't been proven to work for patients in these circumstances.

– NHS England spokesperson

In under 24 hours, more than 2,000 people signed an online petition addressed to the prime minister.


Hospitals in Lincolnshire to get £25m upgrade

Three hospitals in Lincolnshire are to undergo a £25 million upgrade.

Boston Pilgrim is one of the hospitals set for an upgrade

Pilgrim Hospital in Boston, Lincoln County Hospital and Grantham and District Hospital will benefit from the money which will be used to upgrade accommodation and improve facilities for patients.

Work has already started on site and the redevelopment is expected to be finished by March next year.

Hundreds march against "increasing privatisation" of NHS

Hundreds of campaigners staged a march through central Leeds earlier - against what they describe as the 'increasing privatisation' of the health service. The protestors say they are also worried about what they call 'cost driven cuts and closures'.

However, the Department of Health say use of the private sector in the NHS accounts for only six percent of overall budgets:

Department of Health defends use of private sector

The Department of Health have issued statement in response to today's anti NHS privatisation march.

Department of Health say private sector accounts for just 6% NHS

"Use of the private sector in the NHS represents only 6% of the total NHS budget - an increase of just 1.7% since May 2010. Charities, social enterprises and other providers continue to play an important role for the NHS as they have done for many years. The NHS will remain free at the point of use and patients can already choose where they have NHS treatment."

– Department of Health


Protestors fear healthcare will only be available to rich

Protestor calls for an end to NHS cuts

Leeds Hospital Alert say 80% of England's hospitals are already in financial deficit and struggling to cope with rising demand. They are expected to reduce hospital admissions and send patients into 'the community' while the share of the health budget for GPs has been cut, spending on social care slashed by 20%, and the number of district nurses halved in the last ten years

"We must not allow a return to pre July 5th 1948 when only the rich could afford health care. It is our NHS. We must make crystal clear at the election that the NHS is not for sale."

– Beatrice Rogers, Chair of Leeds Hospital Alert

Victims of 'tainted blood' scandal still seeking justice

Thousands of people who were infected with deadly diseases during routine blood transfusions a quarter of a century ago are fighting for justice.

The tainted blood scandal has been described as one of the biggest disasters of the NHS. Those affected are awaiting the publication of a report, which they hope will finally give them both the answers and the recognition they've been looking for.

Some contracted HIV - others Hepatitis C.

One of those with hepatitis C is Glenn Wilkinson from Hull. Tomorrow he will be in Edinburgh where the results of the six-year long inquiry will be released.

This report from James Webster includes photos showing the medical effects of Mr Wilkinson's condition:

NHS whistleblower: report doesn't go far enough

The most senior NHS whistleblower has said a major new report into the problem, published today, doesn't go anywhere near far enough. Gary Walker, the former Chief Executive of the United Lincolnshire Hospitals Trust, who lost his job five years ago before speaking out, says not enough is being done to tackle those who victimise staff who voice their concerns.

The Freedom to Speak Up report was written by the QC Sir Robert Francis who says the NHS needs to undergo a culture change when it comes to whistleblowing. Those who do speak out, he says, often find themselves in a "toxic mix of grievance and disciplinary action" from their bosses.

He's laid out 20 principles and wants freedom to speak up guardians in every hospital and an independant national officer to review complaints. He says something needs to happen now.

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