New specialised commissioning consultation launched
NHS England has today launched a consultation on four related policies that describe how NHS England will make decisions on funding for treatments that are not currently routinely commissioned.
The four policies are: in-year service developments, individual funding requests, funding experimental and unproven treatments, and continuing funding after clinical trials.
The public consultation, which launches today, will be open for 12 weeks and will ensure the policies help NHS England make the most effective, sustainable and fair use of its finite resources. The key themes of the consultation findings and feedback will be published on the NHS England website.
The draft policies are the result of a review of the eleven existing policies established when NHS England became responsible for commissioning of specialised services in 2013. The review, which took into account the lessons learned from using the policies in practice, as well as feedback from stakeholders, found that many of the original eleven are now covered by Department of Health or other NHS England policy. The four areas that still require distinct policies are the focus of the consultation.
A series of events will be run in conjunction with the consultation.
Face to face events
Details of these events and links for registration will be posted on the NHS England events page on 24 October.
Webinar events
Further webinars will be organised for later on in the consultation period
17 comments
I do not believe that the IFR process is fit for purpose for proton beam radiotherapy applications. These are reviewed by the national proton panel, and if the evidence supports the use of protons then the panel will advise the applicant to submit an IFR. These are funded separately from a distinct proton central fund. Many of these applications are declined by just the screening phase and not all IFR groups seem aware of the separate funding policy.
There is a serious issue of timing, as most radiotherapy cases need to start treatment within 40 days of diagnosis for maximum chance of cure, and given that the proton facilities are in USA, the issue of travel has to be factored in, so. A turnaround time of 30 days mean children/young adults will have poorer survival because of this delay. Surely the SOP needs to clearly state that proton beam applications that have been reviewed by the national panel should be approved immediately, especially given the separate funding.
I have serious concerns that the IFR process does not work for proton beam radiotherapy applications. These are rare cancers, which have been extensively discussed by the national proton panel who then support an IFR on the basis of evidence.The 30 working day response time is unacceptable for radiotherapy start dates and travel abroad without risking potential harm to local control and survival of patients. I understand a separate budget for proton radiotherapy exists that these cases don’t match the general process but this does not appear to be known by IFR selection groups. There is obvious discrepancies within regions, with some approving cases and other declining similar diagnoses/cases. Might I suggest that all proton applications that have already been screened and approved by the national proton panel are approved immediately (written into SOP) as these are funded by a separate budget. Writing this into the SOP will reduce the current discrimination/Postcode lottery.
issues:
Restrictive nature of the IFR policy. True clinical exceptionality doesn’t exist often
Lack of clarity regarding process for in year developments
Could this be open to legal challenge as it’s prohibitive?
Communication is poor with no two way process
CCU process doesn’t not work well at present with the screening panel asking the same questions so what level of clinical involvement is used?
this process restrict access to drugs in small charts of patients with rare conditions while NICE approved therapies are readily available and often of dubious benefits in larger cohorts.
Service developments are slow and with a very poor mechanism for introduction.CRGs have limited say in what is commissioned or in consultation
Thank you for your comment, please do submit your views through the consultation hub before the consultation closes on the 15th January so that they can be considered.
Kind Regards
NHS England
As a clinical oncologist working with paediatric, teenage and young adult patients, my experience is that the IFR process seems geared to drug treatments rather than radiotherapy, including proton beam therapy (PBT). The 30 day timescale for turnaround is not realistic for radiation requirements for malignant or otherwise aggressive disease. A patient of mine progressed before arriving in the USA for PBT as the IFR was bounced initially, despite another very similar case had been approved not long before. This was despite the case being supported for PBT by the national proton panel – there needs to be a different system for PBT exceptional cases other than the current IFR process. It is not responsive enough for the clinical needs of patients.
CSLBearing gained a license to approve REsprezza for alpha one antitrypsin patients last year, when is this going to become a reality of treatment for the UK patients suffering this deadly disease? Can you update that? The evidence is there that infusion replaces the protein we lack and this surely has to be now reviewed and allowed for the few of us in the severe category..can I ask you update me and also the dates this will be up to review via NICE , we have waited to long for decent care and I really hope that going forward now we can achieve our goal of therapy for alpha patients in the UK, please update. Also if this is being looked at outside of the mainstream and going into IFR if indeed that is now in place? Thanks.
We should collectively give some thought to regional MSK Pain services within rheumatology and primary care. These patients can be well managed within an integrated community clinic setting at relatively low cost. We have a good model for this in Salford if anyone is interested. These patients, in my view, are not well served within a busy genereral rheumatology clinic.
“A series of events will be run in conjunction with the consultation.
Face to face events
29 November 2016 10:00am – 12:00pm London
7 December 2016 10:30am – 12:30pm Manchester
Webinar events
30 November 2016 3.30pm – 5pm
6 December 2016 4.00pm – 5.30pm
3 January 2017 – 2.30pm – 4.00pm
9 January 2017 – 3.00pm – 4.30pm”
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Come off it, that isn’t a series of consultation ‘events’ on such important issues by any stretch of the imagination.
You haven’t even got a F2F event in your own home city of Leeds.
Just as with STPs this is yet another tactic to steamroller thru’ a series of measures without proper consultations with P&P.
Not these ‘pretend’ reps of we, the P&P – such as self-declared Patient Leaders, and employees of the Gov’t financed VCS sector. What is needed is true reps of P&P, selected by us, and reporting back to us. Not people selected by NHS-E.
It’s Our=NHS
WE demand Our=Say
Hi Kassander
Our engagement plans have been assured by NHS England’s Patient and Public Voice Assurance Group to ensure they are proportional to the impact the proposed changes may have and represent an appropriate use of NHS resources. We will consider holding further events if there is sufficient demand, although currently all these events have plenty of places remaining
Kind regards
NHS England
Good to see IFRs on the list – present system really not working and hugely time consuming. Many requests seem to be dealt with by people with no experience of the rare disease in question?
Kind regards
Justin Mason
Hi Justin,
Thanks for your comment. Please do submit your views on the IFR process through the consultation hub. You are also very welcome to attend or join one of our engagement events to share your experiences and suggest improvements.
Kind Regards
NHS England
Will the use of SCIg v IVIg be discussed?
Hi Liz
Thank you for your comment.
This consultation is about the processes NHS England will follow when making decisions about funding of treatments and interventions outside of a published policy or mandated NICE guidance. The consultation is not about specific treatments or interventions. If you are able to attend one of the webinars or engagement events you will be able to find out more about the proposals and what they may mean for patients.
Kind regards
NHS England
I am not sure that 12 weeks is along enough time for adequate considered consutation
Hi Stephen,
Thank you for your comment.
12 weeks is in line with Government best practice. As the consultation guide describes, these are not new policies. NHS England has had interim policies in place to cover these situations for some years. We have held a number of engagement events with key stakeholders (including patient groups) over the past 12 months to help inform the development of the policies prior to the launch of this formal consultation.
Kind regards
NHS England
Develop and plough into IAPT. Yes it works well with the stepped Care model, but the opportunity for it to be a stand alone (less referring/step-up and nipping mild to modertaes in the bud is currently under-recognised.
Hi Chris,
Thank you for your comment however IAPT is outside the scope of this current consultation.
Kind Regards
NHS England