NHS pays up to treat rare conditions. it is easier to fund rare than common expensive treatments.

Tell me what you fear, and I will tell you what has happened to you, the psychologist D W Winnicott wrote in the 20th century. What citizens are afraid of in health is being treated unfairly, or (more likely today) neglected unfairly. It is good news to hear that some rarer conditions will be funded. The post code lottery however applies as Scotland, Ireland and Wales have yet to decide. Winnicott was not thinking of the “family” as you in the above quote, but replacing you by “your family” gives an insight into what is happening to the fears of the population. Bear in mind that it is easier to fund rare and expensive treatments, than common and expensive ones…

Kat Lay reports 25th Feb 2017: NHS pays up to treat rare conditions

The NHS has agreed to fund new treatments for three rare conditions that affect about 145 people a year.

Cancer patients who relapse after stem-cell treatment will be given a second transplant; people with dense deposit disease, a kidney condition, will be given the drug eculizumab; and riociguat, which treats pulmonary arterial hypertension, will be prescribed for people if other treatments fail.

NHS England had said that a second stem-cell transplant was too expensive and compared poorly with other drugs and treatment, but critics cited evidence that it cured one in three people.

In a statement on Facebook, the family of Abi Longfellow, a 14-year-old girl who has been campaigning for eculizumab so that she can have a kidney transplant, said that they would have to move quickly as the delay had caused complications to her condition.

John Stewart, of NHS England, said that the decision to pay for the treatments, which had not previously been available, was the culmination of a plan for 22 new “treatment options” and was possible because of “additional investment coming on stream from April”.

In a statement on Facebook, the family of Abi Longfellow, a 14-year-old girl who has been campaigning for eculizumab so that she can have a kidney transplant, said that they would have to move quickly as the delay had caused complications to her condition.

John Stewart, of NHS England, said that the decision to pay for the treatments, which had not previously been available, was the culmination of a plan for 22 new “treatment options” and was possible because of “additional investment coming on stream from April”.

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This entry was posted in A Personal View, Commissioning, Good News, Patient representatives, Political Representatives and activists, Post Code Lottery, Rationing, Stories in the Media on by .

About Roger Burns - retired GP

I am a retired GP and medical educator. I have supported patient participation throughout my career, and my practice, St Thomas; Surgery, has had a longstanding and active Patient Participation Group (PPG). I support the idea of Community Health Councils, although I feel they should be funded at arms length from government. I have taught GP trainees for 30 years, and been a Programme Director for GP training in Pembrokeshire 20 years. I served on the Pembrokeshire LHG and LHB for a total of 10 years. I completed an MBA in 1996, and I along with most others, never had an exit interview from any job in the NHS! I completed an MBA in 1996, and was a runner up for the Adam Smith prize for economy and efficiency in government in that year. This was owing to a suggestion (St Thomas' Mutual) that practices had incentives for saving by being allowed to buy rationed out services in the following year.

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