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NHS England in u-turn after legal challenge over commissioning policies

NHS England reveals it has scrapped key meetings on whether to fund a series of treatments for serious conditions following the threat of legal action

2 December 2014

NHS England has confirmed, in the face of a High Court legal challenge, that it will go back to the drawing board over its new procedure for considering draft specialised clinical commissioning polices.

Law firm Leigh Day, acting for a member of the Society for Mucopolysaccharide Diseases (the MPS Society) sent an urgent pre-action letter to NHS England on Friday 28th November, threatening Judicial Review proceedings.

In the letter Leigh Day challenged the use of a scorecard system when deciding which treatments to commission. They argued that it was unlawful that the policy explaining the use of the scorecard had not been published and that there had not been any public consultation over its use.

NHS England has now replied to confirm that in fact the process for commissioning treatments is undecided, despite the initial stages having been completed. In their response to the letter sent by Leigh Day, NHS England’s lawyers stated:

“The next step is for NHS England to consider in December the decision-making process(es) to be used in specialised commissioning and how treatments should be prioritised.”

The letter also stated that the use of a scorecard may be ‘retained or jettisoned entirely’ but that NHS England will carry out a public involvement exercise on its proposals.

Lawyers Merry Varney and Charlotte Skouby from Leigh Day represent the mother of a young boy known only as Z, who suffers from a progressive, life-limiting disease. Z was diagnosed at the age of 2 with the ultra-rare condition Mucopolysaccharidosis IV Type A (MPS IVA) syndrome, an inherited disease that affects one in every 200,000 births.

Z has been receiving innovative drug therapy treatment for MPS IVA sufferers as part of a drug trial, which has now concluded.

He continues to receive the drug on a compassionate basis, pending a commissioning decision from NHS England. A draft clinical commissioning policy had been put forward to NHS England for this drug to be made available on the NHS to MPS IVA sufferers.

The policy, along with others, was considered by one of the 5 national Programme of Care Boards earlier this year. The POC Board used a scorecard to assess the policies for consideration, which Leigh Day argued was unlawful as it appeared to heavily prejudice treatment for rare diseases.

The process put forward by NHS England has now been scrapped and they will have to start again or face future legal action.

Merry Varney from the Human Rights team at Leigh Day said:

“Although we are pleased that Z’s treatment will no longer be considered for NHS funding by an unfair process, the fact that NHS England started the process of specialised commissioning without a clear policy in place is very disappointing.

“The work involved in preparing policies for consideration by NHS England is no doubt substantial and it is obvious that to avoid time and resources being wasted, a clear plan should have been in place.

“Whether without this threat of legal action NHS England would have carried on regardless making it up as they went along is unknown, but now Z at least has hope that his treatment will be more fairly assessed and hopefully result in him receiving this life changing treatment for as long as he needs it.”

Christine Lavery of the Society for Mucopolysaccharide Diseases stated:

“Whilst NHS England is now acknowledging that they haven’t got the robust processes to decide funding for treatments for rare and ultra-rare diseases; the delay in the decision making process discriminates against other young children and adults with mucopolysaccaridosis IV Type A, who were not part of the clinical trial, and are unable to receive the life changing treatment until the process is developed and the reimbursed funding is approved.”

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