How can I access the evidence my NHS CCG uses to make their funding policy decisions?

[DrRumplestiltskin]

I have directly requested from Gloucestershire CCG the evidence they used to decide not to fund a particular procedure. Their response was "the policy not to fund this procedure was made a number of years ago so I’m sorry I can’t provide you any further information on this"

In the past I've made similar requests, and always been fobbed off. How can I make them actually share this evidence? They are making a decision which directly affects my health and life, they claim they used evidence to make that decision, but when I want to understand this decision, they refuse to share the evidence. Do I have to submit an FOI?

[JossS]

I am no expert on this, but this may not be specific to Gloucestershire but is something taken nationally by NICE - so it may be a case of just asking the wrong people.

If you feel you can say what the procedure is, maybe one of the other users or admins here may be able to shed some light on it to help you find your answers.

[DrRumplestiltskin]

Thanks JossS. No, it's specific to Gloucestershire. The procedure is surgical sperm recovery, which NICE does recommend where appropriate (section 1.12.5 of the Feb 13 Fertility: Assessment and treatment for people with fertility problems. Although there is a confusing bit in section 1.4.2 where it says that surgical correction of epididymal blockage should be offered in preference to SSR where appropriate. In this case it's not appropriate, as the condition being treated is congenital bilateral absence of vas deferens). Other health authorities/CCG do fund this procedure.

The thing that's really thrown me is that they told my GP that the reason they don't fund it is because of "reduced chances of success with this procedure". I have a PhD in medicine, and I work at a university, so I have good access to PubMed. Since the CBAVD diagnosis, I have been voraciously reading the literature on assisted reproduction for patients with this condition, and while I can find evidence for a slight increase in congenital defects of the offspring of men with CBAVD, I haven't found any evidence for reduced chances of success depending on the source of sperm, beyond the fresh vs frozen sperm issue. They didn't elaborate on "success" - did they mean success of extracting the sperm, or success in using it for conception?

Basically, if they know something about the success or failure of this procedure that I haven't previously come across, I would like to have that information before spending thousands on surgery. Which is why I asked them for it.

[JossS]

If you are not already in contact with her, you could write directly to Kalpana Reddy, who seems to be the head of the team at the Cotswold Fertility Unit

gloshospitals.nhs.uk/en/War...

It does rather sound like your initial response was from someone who doesn't actually have the authority to give you a decent answer (or can even find the answer.)

Not uncommon in large organisations, sadly.

[Emily_Jesper Partner Sense About Science]

I have heard from someone who works in health policy that NICE guidance isn't mandatory, and the CCG can decide what they can and can't afford within their health economy. You could try your local Healthwatch asking for more details: healthwatch.co.uk/.

I'll ask a fertility charity to post who might have specific knowledge on this.

[DrRumplestiltskin]

Thanks Emily_Jesper. I don't have a problem with their decision not to fund the procedure, (well, obviously I'd be happier if they did, but I understand that it's at their discretion; although it would have been nice if it had been on their list along with all the other interventions for fertility, which is easily available online) it's that I want to know what they know about it that led to them not funding it. I want to be able to make an informed choice. Thanks for the healthwatch link, I will look into that.

The response I got was from IFR Manager at Gloucestershire CCG - so the person who decides if individuals can have funding for interventions that are not normally funded. If she doesn't have access to the material they use to decide what treatments are funded, I really don't know who would.

I haven't been in contact with Kalpana Reddy, but our fertility clinic didn't have any idea which trusts/CCGs funded which treatments, never mind why. The onus was on us to find out what was funded (theoretically via our GP, who also didn't know).

I've asked similar questions of WHSSC, who commission services in Wales. The answer is always the same - they always know what they will and will not pay for, but they will never produce evidence to justify their decisions.

[skybluepink in reply to DrRumplestiltskin]

If they are using administrations on remits to decide ,without reason , this is illegal as they have no discretion so disregard history & mitigating circumstances & human rights /civil liberties abuse .

Even the Police & Law & Government are allowing this robotic performance by the not academically & ethically qualified in their name burying their heads in the sand as can be seen in CASE of most tragedies especially Grenfell & Sepsis .

I suspect the unproportionally represented CCG is making decisions directed by their employers allowing most Drs to be employed p/t so can work here & in PRIVATE sector & the only people in charge is the Head of Security as cannot answer fairly so blame & set up .

I am getting legal letters inquiring about oxygen when not diagnosed by a dept not directed by a Specialist so there was no Testing or Referrals even when have had the cardiac arrest ??!!I

Before MI i had attended Link Meetings in London where they wanted to exchange swimming lessons for diagnosis of serious conditions such as COPD & Diabetes .As for the Rare conditions ?????!!!I said to them this may be ok if Medical Specialist in charge in addition, not for those running depts on a remit not diagnosing yet this wass to replace .T

This is now happening to me with heart failiure emanating from neglected underlying disabilities .They ignored issues where hospital appts & disabled bay not transferred when I moved .And so the corruption UNFAIR hEARING goes on?

[AllanPacey]

Surgical sperm recovery (often called PESA, MESA or TESE depending on the specific technique) is an established procedure in assisted conception and adds only a moderate cost to the overall cost of an IVF or ICSI cycle. Its success relies on the underlying pathology but the 2013 NICE guidelines summarise it well when it states at recommendation 154:

"Surgical sperm recovery before ICSI may be performed using several different techniques depending on the pathology and wishes of the man. In all cases, facilities for cryopreservation of spermatozoa should be available.”

Indeed in the narrative a few lines back it specifically states that:

PESA, MESA or TESE and ICSI are effective in men with CBAVD and in those with failed reversal of vasectomy [Evidence level 3]

and three references are cited. It would seem illogical in my view to fund IVF or ICSI as the CCG does (see infertilitynetworkuk.com/ni... but then not fund surgical sperm recovery. The CCG should have some minutes available of the meeting where that decision was taken. This should be available online but if not should be accessible by FOI request.

There is no evidence I am aware of to suggest that the children born following surgical sperm recovery are unhealthy or at risk of congenital abnormality with one exception.

In cases of CBAVD because of an underlying genetic condition such as a cystic fibrosis mutation) then there is an increased risk of having a child with the same CF mutation. If this is the case, then it may be that pre-implantation genetic diagnosis (PGD) is recommended and the CCG are refusing to pay for surgical sperm recovery because they are unwilling to pay for PGD.

This is quite a folly in my opinion, but I have heard of similar illogical decisions before.

[DrRumplestiltskin in reply to AllanPacey]

Thank you for your thorough response, AllanPacey. What you've said aligns with everything that I've been able to find out about SSR and assisted reproduction (the congenital abnormalities I referred to are common things such as cryptorchidism, which is one of those things where there's debate over whether it's the IVF/ICSI causing the problem, or the fertility problems the parents have which necessitated the IVF/ICSI to start with. My impression is that as more people undergo these procedures, the risks are normalising, anyway).

I have started looking back through meeting minutes, but so far haven't found anything. Lack of logic is frustrating, but it would be less so if they were just honest about it, or said it was cost based, rather than referring to "evidence" that they then won't provide.

[Emily_Jesper Partner Sense About Science]

Infertility is a global public health issue: who.int/reproductivehealth/...

[JossS]

Forgive me, but I do not see the relevance of that comment to this thread. This is about a particular health policy and openness about funding issues, not a political discussion.