Treatment for those with fertility problems was back in the headlines last week in what is hopefully good news for couples unable to conceive. The body which sets guidelines for treatment has criticised local health service decision makers for ignoring its recommendations, calling on NHS England to step in and ensure patients across the country are provided with equal access to IVF.
This is a strong move for the National Institute of Health and Care Excellence (NICE). Their announcement attacks head on last month's exposé by Fertility Fairness which found just 1 in 5 trusts are currently offering women under 40 the full three recommended rounds of treatment.
In urging trusts to reconsider their decisions about IVF, NICE is addressing the quintessential NHS 'postcode lottery' issue. Whilst I fully support them in this, the current inconsistency in treatment available raises a very serious question about the role of NICE guidelines more generally.
There are undoubtedly choices that need to be made about what will be available on the NHS and what will not. And there will be differences of opinion on philosophical and often ethical questions - such as whether smokers should be required to give up smoking before they are treated for related heart or lung disease. The ever increasing pressure on the NHS to cope with an ageing population and balance the books, has created lively public and provider debate about many such issues.
But NICE is there precisely to help with these issues; their express job is to work out the balance between the relative effectiveness of a treatment and benefit to an individual and the cost to the tax payer. So when the experts at NICE have deliberated and spoken, why do local NHS bodies feel justified in overriding the guidance they set out?
The problem is that NICE guidance is just that - 'guidance'. Whilst providers are obliged to fund drugs approved under the NICE 'technology appraisals', the rest of the guidance, and crucially the 'quality standards', are still up to local discretion. The intention is that the standards should be followed, and they even form part of the CQC's inspection process, but ultimately the hospitals, and the groups of GPs running local commissioning, are free to make their own decisions about what to spend taxpayer's money on.
In an age when, thanks to the wonders of 'Google', we are all becoming more informed about our health and social care, the current application of NICE guidance risks causing confusion and anger among patients.
Imagine for a moment that you were having trouble getting pregnant and you wanted to find out what sort of treatment you might be entitled to on the NHS. A quick search would bring up the NICE website explaining the treatment that should be made available to those with 'unexplained infertility' who have been trying for two years and are within certain age brackets. Having found this information, those who fit the criteria would understandably be encouraged by this, and head in to any consultation with their doctor with an expectation that they were going to get the help 'advertised'. So when people are denied this treatment, it is not surprising to hear them accuse the NHS of 'rationing' services' and headlines branding decisions as a 'cruel betrayal' of childless couples.
What makes this even worse is the lack of transparency around decision making. We have heard from local Healthwatch across the country who are concerned about NHS commissioners holding meetings behind closed doors, rushing through consultations and offering local people only a veneer of choice when it comes to deciding which services to offer. It's a classic 'Dr Knows Best' scenario. In Bedfordshire for example, the local Clinical Commissioning Group (CCG) has just closed a public consultation on IVF, yet none of the three options on the table met the NICE guidance, skewing the exercise from the start.
So what needs to happen?
Firstly, whilst NICE recommendations aren't compulsory, it is vital that local decision makers don't forget the intention behind the guidance. It is there to set the standards that everyone should expect, and should therefore be applied unless there is extremely good reason not to. This shift in attitude requires direction from the top, with NHS England getting a firmer grip of their own commissioning and setting a clear expectation for local decision makers about following the advice of the NICE experts. This might ultimately result in the guidance being made compulsory but at least in the short term it should improve consistency.
Secondly, I think there is a need to clarify and, if necessary, strengthen the requirements on commissioners to consult with their local communities about the services that will be provided. NHS England is supposed to provide assurance at a national level that communities are being consulted by local decision makers, but when we asked them for a recent report on the quality of public engagement by CCGs, they were unable to provide us with anything persuasive. If people are going to have any faith in the quality of local decision making, we all need to know that consultation is strong and deep and NHSE have an important role in assuring us all that this is the case.
In my view, these two steps would significantly improve the current situation. It would establish the importance of NICE guidance, confirm and assure the importance of public engagement in these critical decisions, and provide the public with confidence about the standards we can expect, empowering us in our interaction with services.
As the five year forward view published at the end of last week made plain, there are some tough decisions to make about which services are offered on the NHS. All the more reason that these decisions should be transparent to all, made in meaningful consultation with local communities, and that the same NICE standards should apply up and down the country.
In the meantime, we urge users and consumers of services to refer to NICE guidance and contact their local Healthwatch where they think there is a need to challenge decisions about the local application of national guidance.