Today, Sunday 4 December 2016, NHS England has announced its decision to routinely commission ten new specialised treatments. This is good news for some, but NHS England’s commissioning of specialised treatments still doesn’t work for patients.
The decision announced today is part of the process for the 2016/17 financial year – a decision that should have taken place before April 2016. Regardless of the legal challenge that has been brought in the intervening time, this decision is now, at the very least, eight months late.
Whilst we are glad that patients waiting to hear whether they will be given access to life-changing treatments will now have certainty about their situation, this has come after far too long a wait.
Though some rare disease groups have been successful in securing access to life-changing treatments, some have not. At this time, there is no way of knowing if these decisions – which can have such a large impact on the lives of patients and their families – were made in a fair and equitable way.
NHS England has acknowledged that their prioritisation process is not fair for rare disease treatments, and has not yet provided a clear explanation as to how this result was decided upon by their Clinical Priorities Advisory Group.
As we near the next financial year, there has been no update on how NHS England intends to improve this process. The clock is ticking, and it seems increasingly unlikely that NHS England will be ready with an improved – and importantly, stakeholder approved – process in time for the next commissioning cycle which begins in April 2017.
Without an improved process, even more rare disease patients will face the same situation in 2017/18 that we have seen this year.
Alastair Kent, OBE, Director at Genetic Alliance UK said:
“Whilst we welcome the fact that at last a decision has been announced, we are extremely concerned about the delays in getting to this point and the lack of transparency and effective communication about the decision making process. NHS England is currently failing rare disease patients and must now show that they can improve the process so that it works for us. It is vital that they do this before the next round of commissioning in the coming year.”