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12-year-old battling kidney disease set to meet NHS bosses

The family of a girl from Wakefield who's been denied a potentially life-saving drug will meet NHS bosses later today.

Abi Longfellow has been battling the illness for two years Credit: ITV News

Abi Longfellow's kidney condition is too rare for the NHS to routinely pay the £136,000 a year bill the drug manufacturer is demanding, but not rare enough to be funded as an 'exceptional case.'

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

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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.

Mitch Winehouse launches substance awareness scheme in Gainsborough

The father of Amy Winehouse, who died in 2001, has launched a new programme in her memory to educate children about substance misuse.

Mitch Winehouse with students and staff at Gainsborough Academy

Mitch Winehouse chose Gainsborough Academy to launch the Amy Winehouse Resilience Programme. Its aim is "to support, inform and inspire vulnerable and disadvantaged young people to help them reach their full potential".

The Winehouse family spoke to students about Amy's death, the impact of substance misuse and the Resilience programme.

Gainsborough Academy said, "It is crucial that we work together to educate the young people in the community to make the right choices for their future".

Doctors offered up to £5,000 to work in East Yorkshire

General Practice doctors are being offered financial incentives of up to £5,000 to work in Hull and East Yorkshire.

Editorial Image Credit: Press Association

The county is the second worst in the country for unfilled posts, with over a third of GP training posts currently unfilled.

Along with the financial packages offered to British doctors, the Local Clinical Commissioning group has also started a recruitment programme targeting GPs from the Netherlands to fill the positions.

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Dementia Awareness: Tackling the disease affecting someone every three minutes

Latest figures show that 225,000 people will develop dementia this year - the equivalent to one person every three minutes.

The Alzheimer's Society say that this year in the UK 850,000 people in the UK will be living with the condition.

As part of Dementia Awareness Week, ITV Calendar's Chris Kiddey and Helen Steel have been looking at different ways in which the illness is being tackled in the Region:

Yorkshire Air Ambulance receives biggest ever single donation

Yorkshire Air Ambulance (YAA) has received its largest ever single donation, getting plans for a new helicopter off to a flying start.

Yorkshire Air Ambulance receives biggest ever single donation

The donation of £944,254 was made by Yorkshire Building Society based on deposits placed in its Yorkshire Air Ambulance affinity savings accounts over the past year.

It will contribute towards the Charity’s plans for a future replacement helicopter and takes the total donated by the Society to YAA since 2007 to more than £2 million.

Yorkshire Building Society is committed to supporting good causes where our members and colleagues live and work. To have been responsible for the largest ever donation to the YAA is something the Society is very proud of. We are delighted to be able to help such a vital service as Yorkshire Air Ambulance, which is close to the hearts of many of our members in the region.

– Gary Lacey, Yorkshire Building Society Savings Product Manager

This is the largest, single donation the Charity has ever received and we are overwhelmed by the support of the Society. We are currently looking at provisions for a future replacement helicopter for one of our current aircraft, so these monies will significantly contribute towards the reserves we are starting to build to cover these costs

– Peter Sunderland, Chairman of the YAA

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.

Outbreak shuts Scunthorpe hospital ward

A ward has been closed at Scunthorpe General hospital due to an outbreak of diarrhoea and vomiting.

Credit: Press Association

Ward 24 has been closed to new admissions and patients receiving treatment will not be discharged to nursing or residential homes while they remain an infection risk.

Visitors who have been suffering from diarrhoea or vomiting are urged not to come to the hospital until they have been symptom free for 48 hours.

There's no specific cure for the illness, which is usually mild and shouldn't last more than a couple of days.

The hospital has issued the following guidance for people who have symptoms of diarrhoea and/or vomiting:

  • Drink plenty of water to avoid dehydration
  • Take paracetamol for any fever or aches and pains
  • If you feel like eating, eat foods that are easy to digest
  • Stay at home – don't go to see your GP because norovirus is contagious and there's nothing your GP can do while you have it
  • Contact your GP to seek advice if your symptoms last longer than a few days or if you already have a serious illness
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